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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 (1 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!
08-25-2008 01:51 PM Go to last post
343 3,001
Read the latest industry & research news on interstitial cystitis, painful bladder syndrome, pelvic floor dysfunction & overactive bladder here!
by Jeff
08-23-2008 07:40 AM Go to last post
93 1,012
Review recent recalls of products, drugs and related materials
Yesterday 09:03 AM Go to last post
36 361
ICN Founder Jill offers daily comments on IC events, activities in the ICN office and more!
by noble1
08-25-2008 04:38 PM Go to last post
169 2,787
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!
by stef000
Today 12:04 AM Go to last post
4,075 33,733
Share your Interstitial Cystitis Success Story Here
by Taramc
08-21-2008 03:21 PM Go to last post
561 6,174
Share Your Interstitial Cystitis Story Here. When did it start for you? How did it begin?? What interstitial cystitis treatments worked for you?
Yesterday 04:49 PM Go to last post
1,759 15,496
Yes, remission happens and happens often for interstitial cystitis patients. If you're in remission, please share your story and success tips here!
by jen74
Yesterday 11:21 AM Go to last post
171 2,149
Dedicated to the memory of AuntieDebbieF, this board is a place your gratitudes. Please let your story cheer others!
08-20-2008 09:49 PM Go to last post
682 6,200
by hdb1982
08-26-2008 01:22 AM Go to last post
228 1,281
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!
1,176 10,368
by Lexie
Yesterday 10:24 AM Go to last post
353 2,662
Do you suspect you have interstitial cystitis but haven't been diagnosed yet? Post here!
Yesterday 06:22 PM Go to last post
1,260 9,861
Symptoms of IC (8 Viewing)
by stef000
Today 12:02 AM Go to last post
2,125 17,491
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 formom
08-25-2008 06:38 PM Go to last post
1,101 9,547
Hydroxyzine (Vistaril & Atarax) is a vital therapy for interstitial cystitis. Discuss your success or questions here!
by stef000
Yesterday 06:59 PM Go to last post
409 3,148
Antidepressants are often prescribed for long term pain management purposes. Discuss these here!
by j56
Today 12:42 AM Go to last post
901 7,225
Discuss the use of food supplements here!
Yesterday 09:05 PM Go to last post
196 1,419
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.
Yesterday 11:42 AM Go to last post
538 4,010
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
Yesterday 07:12 PM Go to last post
340 3,107
Discuss DMSO, Cystistat, Heparin, Chlorpactin, Silver Nitrate, Lidocaine
by elamar
08-25-2008 07:08 AM Go to last post
906 6,928
T.E.N.S Therapy (3 Viewing)
08-19-2008 03:21 PM Go to last post
165 1,013
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!
08-25-2008 08:48 PM Go to last post
261 2,363
For patients currently undergoing trial or surgical procedures.
08-08-2008 08:14 AM Go to last post
326 3,395
Share your success stories here!
08-09-2008 07:59 PM Go to last post
249 1,768
For those who have tried neurostimulation and experienced complications or failure, this is a place to receive support.
08-10-2008 07:38 PM Go to last post
293 2,663
Nerve blocks have occasionallhy been used for patient struggling with discomfort. Share your experience here!
08-15-2008 12:45 PM Go to last post
45 274
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.
by Roandro
08-10-2008 06:20 PM Go to last post
42 764
08-26-2008 08:29 PM Go to last post
23 515
Learn more about treatments currently being studied.
by Angeles
Yesterday 01:28 PM Go to last post
163 1,492
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 SharonA
Yesterday 01:09 PM Go to last post
69 1,081
One of the great controversies in IC treatment. Discuss antibiotics here!
08-22-2008 06:03 AM Go to last post
382 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!
Discuss augmentation, ostomies and related procedures here
06-24-2008 04:28 AM Go to last post
119 1,072
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.
Yesterday 10:19 PM Go to last post
441 5,439
by Kara29
06-15-2008 10:59 AM Go to last post
14 197
This forum is for patients who have many issues going on besides IC that are contributing to their illness.
by bri25
Yesterday 12:04 PM Go to last post
131 1,730
Miscellaneous Treatments For Interstitial Cystitis
For more information on these treatments, please visit the ICN Patient Handbook.
Alternative Therapies (3 Viewing)
Herbs, vitamins, supplements have been hotly debated. While none is considered a cure for IC, you can discuss them here.
by Sera
Yesterday 05:43 PM Go to last post
918 7,373
Other Treatments (1 Viewing)
by jen74
Yesterday 08:51 AM Go to last post
651 4,612
Drug Costs & Expenses (1 Viewing)
Patients now struggle to afford many medications. Share your stories here.
07-09-2008 09:37 PM Go to last post
130 939
The IC Diet
Discuss all things related to the IC diet here!
Ask questions about diet and interstitial cystitis IC/PBS here!
by kadi
Yesterday 09:58 PM Go to last post
3,344 25,321
Share your favorite IC friendly recipes and menu ideas here!
Yesterday 01:25 PM Go to last post
68 387
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!
08-26-2008 08:31 PM Go to last post
320 2,203
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 Jess82
08-26-2008 06:23 PM Go to last post
18 40
Are you struggling with hormonal changes?? Are they bothering your bladder?? Need to vent about your body changing?? Do it here!
08-26-2008 04:26 PM Go to last post
42 316
Discuss your thoughts and concerns about depression and anxiety here.
08-26-2008 04:21 PM Go to last post
679 7,497
by sami4
Yesterday 06:57 PM Go to last post
376 3,037
by jjt001
Yesterday 09:22 AM Go to last post
282 2,319
If you're interested in stopping smoking and would like to support others, please post here! You can do it!
08-25-2008 09:43 AM Go to last post
157 1,483
Social Security Q&A (1 Viewing)
Are you considering applying disability insurance? In the Appeals process? Post your questions here.
by TerriT
Today 01:36 AM Go to last post
635 4,627
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!
1,880 17,546
Are you in a flare? Need support? Post here!
Yesterday 09:04 PM Go to last post
2,100 17,584
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 nottoc4
Yesterday 09:22 AM Go to last post
545 4,841
What gets you motivated? Share your ideas and your wisdoms with others.
08-14-2008 10:23 AM Go to last post
283 1,523
Related Conditions to Interstitial Cystitis
IC patients are 100 times more likely to have IBS. Do you? Discuss it here!
08-26-2008 04:37 PM Go to last post
417 2,842
Discuss pudendal neuralgia and/or pudendal nerve entrapment here.
by CGrace
08-20-2008 07:41 AM Go to last post
8 54
Vulvodynia (1 Viewing)
Female IC patients often have vulvodynia problems. Discuss this here!
by Angeles
Yesterday 04:15 PM Go to last post
616 4,651
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 Briza
08-25-2008 09:43 PM Go to last post
116 751
08-26-2008 04:05 PM Go to last post
226 2,017
Discuss other related conditions to IC here, such as CFIDS, endometriosis, lupus, back & leg pain here!
by stef000
Yesterday 06:50 PM Go to last post
1,269 10,149
Pregnancy and Motherhood With Interstitial Cystitis
Yesterday 08:34 PM Go to last post
322 2,186
I'm Pregnant! (1 Viewing)
Yesterday 10:11 PM Go to last post
375 3,968
When a mother or wife develops IC, it can often impact how she feels about her abilities in those roles. Talk about it here!
by Bessie
08-25-2008 01:42 PM Go to last post
411 3,711
If you are an IC patient struggling with fertility, share your thoughts here!
08-26-2008 08:27 AM Go to last post
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!
Newly Diagnosed Man? (1 Viewing)
Are you a newly diagnosed man? Meet others here!
Yesterday 02:54 PM Go to last post
193 1,159
Single Life and IC
Dating with IC (1 Viewing)
Here's a place to share your questions, ideas and strategies on dating with IC.
Yesterday 01:55 PM Go to last post
8 71
by Kathi
08-04-2008 02:38 PM Go to last post
6 8
08-20-2008 07:42 PM Go to last post
14 200
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