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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!
Today 02:21 AM Go to last post
410 3,390
Read the latest industry & research news on interstitial cystitis, painful bladder syndrome, pelvic floor dysfunction & overactive bladder here!
128 1,282
Review recent recalls of products, drugs and related materials
61 533
Jill's Journal (2 Viewing)
ICN Founder Jill offers daily comments on IC events, activities in the ICN office and more!
191 2,951
Are you a WOW fan?? Want to hang out in an IC guild and make friends??
06-15-2009 04:32 AM Go to last post
6 82
Share Your Interstitial Cystitis Story
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!
by mary124
06-30-2009 02:14 AM Go to last post
24 187
Introduce Yourself and share your interstitial cystitis story here!
4,855 39,695
Share your Interstitial Cystitis Success Story Here
Yesterday 10:53 AM Go to last post
639 7,051
Share Your Interstitial Cystitis Story Here. When did it start for you? How did it begin?? What interstitial cystitis treatments worked for you?
1,993 17,234
Yes, remission happens and happens often for interstitial cystitis patients. If you're in remission, please share your story and success tips here!
196 2,447
Dedicated to the memory of AuntieDebbieF, this board is a place your gratitudes. Please let your story cheer others!
732 6,545
by Briza
06-28-2009 09:49 AM Go to last post
243 1,363
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!
1,324 11,640
382 2,878
Do you suspect you have interstitial cystitis but haven't been diagnosed yet? Post here!
Yesterday 03:42 PM Go to last post
1,460 11,340
Symptoms of IC (2 Viewing)
by Bekah79
Yesterday 05:34 PM Go to last post
2,386 19,659
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 SueP1
Yesterday 12:36 PM Go to last post
1,263 10,583
Discuss the use of Ditropan, Detrol, Urelle, Azo Pain Relief tablets here!
by cowdean
Yesterday 05:48 AM Go to last post
63 411
Hydroxyzine (Vistaril & Atarax) is a vital therapy for interstitial cystitis. Discuss your success or questions here!
by Krisssy
07-01-2009 11:04 AM Go to last post
478 3,524
Antidepressants are often prescribed for long term pain management purposes. Discuss these here!
07-02-2009 12:36 PM Go to last post
1,053 8,241
Discuss the use of food supplements here!
by Salomeh
Yesterday 09:25 AM Go to last post
301 1,893
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.
682 4,975
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
448 3,971
Discuss DMSO, Cystistat, Heparin, Chlorpactin, Silver Nitrate, Lidocaine
by BT2008
Yesterday 06:49 PM Go to last post
987 7,461
T.E.N.S Therapy (2 Viewing)
06-25-2009 09:24 AM Go to last post
180 1,090
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!
Yesterday 07:27 AM Go to last post
284 2,536
For patients currently undergoing trial or surgical procedures.
Yesterday 07:25 AM Go to last post
349 3,590
Share your success stories here!
257 1,846
For those who have tried neurostimulation and experienced complications or failure, this is a place to receive support.
06-29-2009 04:47 PM Go to last post
327 2,871
Nerve Blocks (1 Viewing)
Nerve blocks have occasionallhy been used for patient struggling with discomfort. Share your experience here!
06-30-2009 11:59 AM Go to last post
60 339
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.
Yesterday 05:08 AM Go to last post
43 780
by SharonA
06-28-2009 06:48 AM Go to last post
41 618
Botox (1 Viewing)
Learn more about treatments currently being studied.
by bluetou
Yesterday 09:10 AM Go to last post
198 1,664
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.
06-27-2009 02:10 PM Go to last post
74 1,121
One of the great controversies in IC treatment. Discuss antibiotics here!
Yesterday 01:52 AM Go to last post
410 4,481
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
06-15-2009 11:19 AM Go to last post
122 1,105
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.
by maryla
Yesterday 01:10 PM Go to last post
474 5,803
16 206
This forum is for patients who have many issues going on besides IC that are contributing to their illness.
06-28-2009 08:29 AM Go to last post
169 2,155
Miscellaneous Treatments For Interstitial Cystitis
For more information on these treatments, please visit the ICN Patient Handbook.
Alternative Therapies (1 Viewing)
Herbs, vitamins, supplements have been hotly debated. While none is considered a cure for IC, you can discuss them here.
by wilez
06-28-2009 09:00 AM Go to last post
1,010 7,942
Other Treatments (1 Viewing)
by OllieR
Yesterday 10:08 AM Go to last post
743 5,123
Drug Costs & Expenses (1 Viewing)
Patients now struggle to afford many medications. Share your stories here.
137 1,019
The IC Diet
Discuss all things related to the IC diet here!
Ask questions about diet and interstitial cystitis IC/PBS here!
by Briza
Today 04:55 AM Go to last post
3,845 28,952
Share your favorite IC friendly recipes and menu ideas here!
by Bekah79
Yesterday 06:19 PM Go to last post
208 1,339
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 10:41 AM Go to last post
333 2,320
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 OllieR
06-30-2009 09:36 AM Go to last post
38 213
Are you struggling with hormonal changes?? Are they bothering your bladder?? Need to vent about your body changing?? Do it here!
06-29-2009 07:33 AM Go to last post
84 688
Depression & Anxiety (1 Viewing)
Discuss your thoughts and concerns about depression and anxiety here.
by Briza
Today 04:29 AM Go to last post
783 8,437
07-02-2009 05:11 AM Go to last post
408 3,297
Exercise & Fitness (3 Viewing)
by Ajj1ao
07-02-2009 06:34 AM Go to last post
320 2,586
If you're interested in stopping smoking and would like to support others, please post here! You can do it!
Yesterday 10:06 PM Go to last post
164 1,623
Are you considering applying disability insurance? In the Appeals process? Post your questions here.
by maryla
Today 03:42 AM Go to last post
683 4,985
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!
07-02-2009 01:44 PM Go to last post
2,095 19,457
Are you in a flare? Need support? Post here!
by Bekah79
Yesterday 06:01 PM Go to last post
2,376 19,625
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 Briza
06-28-2009 02:38 PM Go to last post
562 4,993
What gets you motivated? Share your ideas and your wisdoms with others.
by maryla
06-24-2009 12:38 PM Go to last post
310 1,635
Related Conditions to Interstitial Cystitis
IC patients are 100 times more likely to have IBS. Do you? Discuss it here!
07-02-2009 04:18 AM Go to last post
455 3,102
Discuss pudendal neuralgia and/or pudendal nerve entrapment here.
06-26-2009 09:21 AM Go to last post
46 297
Urethral burning and pain can be very frustrating. Share your thoughts and coping strategies here.
Yesterday 09:25 PM Go to last post
6 181
Vulvodynia (6 Viewing)
Female IC patients often have vulvodynia problems. Discuss this here!
by tucson
Today 04:10 AM Go to last post
712 5,545
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 Dakota
06-29-2009 05:19 PM Go to last post
121 786
by Katrina
06-18-2009 03:20 PM Go to last post
252 2,229
Discuss other related conditions to IC here, such as CFIDS, endometriosis, lupus, back & leg pain here!
Yesterday 06:45 PM Go to last post
1,437 11,313
Pregnancy and Motherhood With Interstitial Cystitis
06-20-2009 07:36 AM Go to last post
336 2,310
I'm Pregnant! (1 Viewing)
by ellenjb
07-02-2009 09:59 AM Go to last post
472 4,791
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 sherry6
06-30-2009 07:57 PM Go to last post
434 3,890
If you are an IC patient struggling with fertility, share your thoughts here!
06-25-2009 08:39 AM Go to last post
48 300
05-19-2009 02:26 PM Go to last post
13 121
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!
by Darty17
06-24-2009 06:07 PM Go to last post
212 1,370
Single Life and IC
Here's a place to share your questions, ideas and strategies on dating with IC.
05-18-2009 11:14 AM Go to last post
11 94
04-14-2009 11:46 AM Go to last post
20 24
06-30-2009 09:15 AM Go to last post
32 380
06-12-2009 10:07 AM Go to last post
8 74
by mary124
05-14-2009 06:38 AM Go to last post
6 67
04-14-2009 01:27 PM Go to last post
5 37
by NancyB
06-21-2009 10:24 AM Go to last post
9 131
Family & Friends Of Patients With Interstitial Cystitis
by Bekah79
07-02-2009 05:17 PM Go to last post
406 3,753
Discuss & Compare spouse/partner relations here
by Briza
06-28-2009 02:59 PM Go to last post
247 3,284
06-28-2009 01:55 AM Go to last post
181 1,662
A special place where family members & friends can ask questions & support each other!
by Kathi
05-18-2009 10:04 AM Go to last post
104 547
We need vacation ideas! Share your favorite interstitial cystitis friendly vacation ideas and locations here! We'd also love to hear some great vacation stories too!
by Bekah79
Yesterday 06:21 PM Go to last post
221 1,689
MEET OTHERS BY REGION (USA)
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.
There are many interstitial cystitis support groups in the USA & Canada. See our list of current groups below!
19 43
Meet others from Canada Here!
by KimP
06-22-2009 10:25 AM Go to last post
111 792
European Countries (1 Viewing)
by Angeles
11-27-2008 10:19 AM Go to last post
20 186
Meet other IC patients in the North East Area of our country: CT, DC, ME, MD, MA, NH, NJ, NY, PA, RI, VT
by lulu228
07-02-2009 09:16 AM Go to last post
430 1,845
Meet others from the Southeastern states of our country: AL, DE, FL, GA, LA, MS, NC, SC, TN, VA, WV,
Yesterday 10:49 AM Go to last post
435 2,260
Meet others in the Central (Plains) states of our country: AR, IL, IN, IA, KY, MI, MN, MO, OH, WI
by lisarb
Yesterday 12:51 AM Go to last post
327 1,789
Meet others in the Southwestern states of our country: AZ, NV, UT, NM, TX
by MaryJo
06-15-2009 03:03 AM Go to last post
202 870
06-29-2009 02:49 AM Go to last post
128 550
Meet others in the Northwestern states of our country: AK, ID, MT, OR, WA
06-27-2009 04:33 PM Go to last post
79 453
Meet others in the Midwest/Rocky Mountain states of our country: CO, KS, ND, NE, OK, SD, WY
by Hank02
06-16-2009 07:13 PM Go to last post
75 282
by Rosalie
06-29-2009 03:59 PM Go to last post
191 1,985
Children with Interstitial Cystitis
Yes, interstitial cystitis has been diagnosed in children under the age of five. These children need help too, especially since there are no specialists available for the care of pediatric IC. Let's join resources and share information here!
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!
by jemmom
05-27-2009 07:36 AM Go to last post
64 552
Teenagers With Interstitial Cystitis
From attending school to dating, athletics to explaining IC to friends (should they or shouldn't they?), teen interstitial cystitis patients have important issues that need to be addressed. Let's help them here!
Just for high school students with IC
06-13-2009 07:02 PM Go to last post
77 637
20's CHAT
Are you a college student with interstitial cystitis? Meet other ICers and share strategies here!
by joy0212
04-15-2009 11:27 AM Go to last post
175 1,344
06-29-2009 06:36 PM Go to last post
239 2,057
05-12-2008 05:49 AM Go to last post
124 1,195
30's & 40's
04-26-2009 02:18 PM Go to last post
224 2,189
50's CHAT
Over 50 Chat Board (1 Viewing)
06-16-2009 06:21 AM Go to last post
175 1,106
SPIRITUALITY & FAITH
06-29-2009 05:20 AM Go to last post
1,199 17,838
MISC.
190 1,548
05-22-2009 02:19 PM Go to last post
128 7,022
Share your funny YouTube and blog links here!! Please NO pornography. These are supposed to be funny, to help another IC patient laugh!!
05-22-2009 08:11 AM Go to last post
48 225
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
05-18-2009 10:05 AM Go to last post
110 583
Everyone loves a good movie. Share your recommendations here and discuss the latest movies, videos and TV shows!
by lorenab
07-02-2009 10:34 PM Go to last post
227 2,100
Laughter is the best medicine! Help us laugh today. Share your funniest jokes and stories here!
by Bekah79
07-02-2009 05:21 PM Go to last post
601 4,202
Because IC is only a part of our lives.
by dg2901
Yesterday 10:26 PM Go to last post
1,757 17,326
A place to discuss an interesting book .... or share information about articles you've seen in recent magazines.
07-02-2009 06:36 PM Go to last post
106 732
A "Spot" for sharing pet "tails"
07-01-2009 05:38 PM Go to last post
460 4,613
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!
Yesterday 01:30 AM Go to last post
287 2,715
BOARD MGT.
For Questions About BBS Management & TOS Inquiries
123 716
EOSINOPHILIC CYSTITIS
The ICN is proud to host the Eosinophilic Cystitis Resource Center!
by Melpot
06-14-2009 03:01 PM Go to last post
44 249


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