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ICN - Interstitial cystitis information & support Statistics
ICN - Interstitial cystitis information & support Statistics
Threads: 48,816, Posts: 420,022, Members: 33,515
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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!
01-05-2009 12:42 PM Go to last post
374 3,099
Read the latest industry & research news on interstitial cystitis, painful bladder syndrome, pelvic floor dysfunction & overactive bladder here!
by BT2008
Yesterday 10:54 AM Go to last post
109 1,127
Review recent recalls of products, drugs and related materials
12-18-2008 09:38 AM Go to last post
47 422
ICN Founder Jill offers daily comments on IC events, activities in the ICN office and more!
181 2,895
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!
Today 04:09 AM Go to last post
4,404 36,262
Share your Interstitial Cystitis Success Story Here
01-05-2009 01:51 PM Go to last post
605 6,683
Share Your Interstitial Cystitis Story Here. When did it start for you? How did it begin?? What interstitial cystitis treatments worked for you?
by kadi
Yesterday 04:26 PM Go to last post
1,841 16,052
Yes, remission happens and happens often for interstitial cystitis patients. If you're in remission, please share your story and success tips here!
181 2,275
Dedicated to the memory of AuntieDebbieF, this board is a place your gratitudes. Please let your story cheer others!
by Briza
01-05-2009 02:24 PM Go to last post
704 6,301
by chia
12-26-2008 03:43 PM Go to last post
239 1,335
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!
1,238 10,907
by OllieR
12-27-2008 05:32 PM Go to last post
359 2,716
Do you suspect you have interstitial cystitis but haven't been diagnosed yet? Post here!
01-04-2009 05:57 AM Go to last post
1,324 10,324
Symptoms of IC (9 Viewing)
by zbella
Yesterday 07:05 PM Go to last post
2,223 18,277
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 aleet7
Yesterday 04:18 PM Go to last post
1,174 10,022
Hydroxyzine (Vistaril & Atarax) is a vital therapy for interstitial cystitis. Discuss your success or questions here!
01-04-2009 02:07 AM Go to last post
448 3,362
Antidepressants are often prescribed for long term pain management purposes. Discuss these here!
Yesterday 02:01 PM Go to last post
968 7,660
Discuss the use of food supplements here!
237 1,607
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 aleet7
Yesterday 02:34 PM Go to last post
595 4,455
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 11:56 AM Go to last post
378 3,428
Discuss DMSO, Cystistat, Heparin, Chlorpactin, Silver Nitrate, Lidocaine
by bigred
12-31-2008 09:59 AM Go to last post
931 7,060
T.E.N.S Therapy (1 Viewing)
12-01-2008 07:12 AM Go to last post
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.
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!
12-31-2008 06:24 PM Go to last post
271 2,430
For patients currently undergoing trial or surgical procedures.
336 3,466
Share your success stories here!
by yvette
01-02-2009 04:19 AM Go to last post
253 1,801
For those who have tried neurostimulation and experienced complications or failure, this is a place to receive support.
12-24-2008 12:24 PM Go to last post
300 2,708
Nerve Blocks (1 Viewing)
Nerve blocks have occasionallhy been used for patient struggling with discomfort. Share your experience here!
01-03-2009 01:57 PM Go to last post
55 314
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)
by Roandro
08-10-2008 03:20 PM Go to last post
42 764
by Grammy
01-05-2009 09:06 AM Go to last post
31 573
Botox (1 Viewing)
Learn more about treatments currently being studied.
180 1,556
Cytotec (1 Viewing)
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.
12-11-2008 05:55 AM Go to last post
71 1,103
One of the great controversies in IC treatment. Discuss antibiotics here!
by crispy
01-05-2009 08:57 AM Go to last post
391 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!
Discuss augmentation, ostomies and related procedures here
by sue041
09-15-2008 03:00 PM Go to last post
119 1,085
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 04:59 PM Go to last post
451 5,565
by NewLife
09-10-2008 10:36 AM Go to last post
14 198
This forum is for patients who have many issues going on besides IC that are contributing to their illness.
by SharonA
Yesterday 05:59 AM Go to last post
142 1,932
Miscellaneous Treatments For Interstitial Cystitis
For more information on these treatments, please visit the ICN Patient Handbook.
Herbs, vitamins, supplements have been hotly debated. While none is considered a cure for IC, you can discuss them here.
by NKC
01-05-2009 02:38 AM Go to last post
966 7,671
Other Treatments (1 Viewing)
by Kathi
01-05-2009 12:13 PM Go to last post
696 4,858
Drug Costs & Expenses (1 Viewing)
Patients now struggle to afford many medications. Share your stories here.
by aleet7
Yesterday 11:00 AM Go to last post
134 971
The IC Diet
Discuss all things related to the IC diet here!
Ask questions about diet and interstitial cystitis IC/PBS here!
3,536 26,745
Share your favorite IC friendly recipes and menu ideas here!
118 720
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
12-04-2008 09:52 AM Go to last post
325 2,265
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
01-03-2009 02:11 PM Go to last post
27 127
Are you struggling with hormonal changes?? Are they bothering your bladder?? Need to vent about your body changing?? Do it here!
12-30-2008 07:56 PM Go to last post
60 568
Depression & Anxiety (1 Viewing)
Discuss your thoughts and concerns about depression and anxiety here.
724 7,897
01-05-2009 12:51 PM Go to last post
395 3,151
Exercise & Fitness (1 Viewing)
Yesterday 02:14 PM Go to last post
302 2,428
If you're interested in stopping smoking and would like to support others, please post here! You can do it!
161 1,552
Social Security Q&A (1 Viewing)
Are you considering applying disability insurance? In the Appeals process? Post your questions here.
by dbdab
01-03-2009 08:58 AM Go to last post
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.
Discuss pain management strategies here!
by Briza
Yesterday 08:43 PM Go to last post
1,971 18,348
Are you in a flare? Need support? Post here!
Yesterday 06:00 PM Go to last post
2,204 18,395
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!
Yesterday 09:54 AM Go to last post
554 4,922
What gets you motivated? Share your ideas and your wisdoms with others.
by vm
01-05-2009 01:40 PM Go to last post
294 1,568
Related Conditions to Interstitial Cystitis
IC patients are 100 times more likely to have IBS. Do you? Discuss it here!
by Nonna
01-02-2009 02:33 PM Go to last post
428 2,948
Discuss pudendal neuralgia and/or pudendal nerve entrapment here.
by CGrace
Yesterday 05:02 AM Go to last post
24 144
Vulvodynia (6 Viewing)
Female IC patients often have vulvodynia problems. Discuss this here!
by elamar
Today 03:19 AM Go to last post
659 5,097
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 Jeff
11-13-2008 11:18 AM Go to last post
118 755
240 2,129
Discuss other related conditions to IC here, such as CFIDS, endometriosis, lupus, back & leg pain here!
Yesterday 02:43 PM Go to last post
1,336 10,638
Pregnancy and Motherhood With Interstitial Cystitis
?'s
12-19-2008 12:13 PM Go to last post
332 2,262
Today 04:07 AM Go to last post
430 4,460
When a mother or wife develops IC, it can often impact how she feels about her abilities in those roles. Talk about it here!