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Welcome to the Interstitial Cystitis Network Support Forum.
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 (3 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!
473 3,597
Read the latest industry & research news on interstitial cystitis, painful bladder syndrome, pelvic floor dysfunction & overactive bladder here!
by Pucca
03-08-2010 12:19 PM Go to last post
148 1,564
Review recent recalls of products, drugs and related materials
03-02-2010 06:03 AM Go to last post
68 658
ICN Founder Jill offers daily comments on IC events, activities in the ICN office and more!
by Cora
Yesterday 09:13 AM Go to last post
219 3,200
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!
90 909
Introduce Yourself and share your interstitial cystitis story here!
5,344 43,349
Share your Interstitial Cystitis Success Story Here
by VickiB
Yesterday 01:41 PM Go to last post
694 7,662
Share Your Interstitial Cystitis Story Here. When did it start for you? How did it begin?? What interstitial cystitis treatments worked for you?
by cem
03-06-2010 03:01 PM Go to last post
2,198 18,965
Yes, remission happens and happens often for interstitial cystitis patients. If you're in remission, please share your story and success tips here!
by aleet7
03-08-2010 04:18 AM Go to last post
216 2,730
Dedicated to the memory of AuntieDebbieF, this board is a place your gratitudes. Please let your story cheer others!
by Kathi
03-01-2010 11:17 AM Go to last post
752 6,651
by sofirus
Today 08:16 AM Go to last post
250 1,498
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!
1,429 12,441
Yesterday 02:11 PM Go to last post
406 3,059
Do you suspect you have interstitial cystitis but haven't been diagnosed yet? Post here!
by watata
Today 10:31 AM Go to last post
1,628 12,507
Symptoms of IC (17 Viewing)
2,653 21,674
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 05:51 PM Go to last post
1,394 11,711
Discuss the use of Ditropan, Detrol, Urelle, Azo Pain Relief tablets here!
03-08-2010 11:09 AM Go to last post
132 908
Hydroxyzine (Vistaril & Atarax) is a vital therapy for interstitial cystitis. Discuss your success or questions here!
Today 02:13 AM Go to last post
521 3,895
Antidepressants are often prescribed for long term pain management purposes. Discuss these here!
1,156 8,965
Discuss the use of food supplements here!
Yesterday 05:11 AM Go to last post
419 2,585
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.
799 5,805
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 05:44 PM Go to last post
503 4,411
Discuss DMSO, Cystistat, Heparin, Chlorpactin, Silver Nitrate, Lidocaine
03-05-2010 07:38 PM Go to last post
1,046 7,935
T.E.N.S Therapy (3 Viewing)
by Jan S.
03-07-2010 07:33 AM Go to last post
185 1,165
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!
301 2,632
For patients currently undergoing trial or surgical procedures.
01-28-2010 05:37 PM Go to last post
361 3,684
Share your success stories here!
by rjyoon
02-19-2010 02:15 PM Go to last post
261 1,868
For those who have tried neurostimulation and experienced complications or failure, this is a place to receive support.
343 2,973
Nerve blocks have occasionallhy been used for patient struggling with discomfort. Share your experience here!
68 376
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)
07-17-2009 12:35 PM Go to last post
44 781
by Jamey
03-05-2010 10:43 AM Go to last post
46 661
Learn more about treatments currently being studied.
206 1,710
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 stef000
01-02-2010 12:31 PM Go to last post
69 1,168
One of the great controversies in IC treatment. Discuss antibiotics here!
by Shaelyn
03-05-2010 12:32 PM Go to last post
429 4,684
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 aleet7
02-18-2010 07:24 AM Go to last post
126 1,143
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 04:30 PM Go to last post
500 6,291
Nerve Ablation (2 Viewing)
by NancyB
03-02-2010 07:16 AM Go to last post
20 218
This forum is for patients who have many issues going on besides IC that are contributing to their illness.
191 2,398
Miscellaneous Treatments For Interstitial Cystitis
For more information on these treatments, please visit the ICN Patient Handbook.
Alternative Therapies (4 Viewing)
Herbs, vitamins, supplements have been hotly debated. While none is considered a cure for IC, you can discuss them here.
03-08-2010 04:05 AM Go to last post
1,106 8,558
Other Treatments (5 Viewing)
Yesterday 08:16 AM Go to last post
781 5,365
Patients now struggle to afford many medications. Share your stories here.
03-06-2010 02:29 PM Go to last post
142 1,123
The IC Diet
Discuss all things related to the IC diet here!
Ask questions about diet and interstitial cystitis IC/PBS here!
4,285 32,019
We're looking for great new recipes and ideas for IC friendly HOT beverages that will warm us up on those cold winter evenings. $100, $75 and $50 winners!! Ends Dec. 31, 2009
02-26-2010 04:17 PM Go to last post
48 255
Share your favorite IC friendly recipes and menu ideas here!
by kadi
03-07-2010 10:24 AM Go to last post
349 2,178
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 Sand
03-03-2010 01:18 PM Go to last post
345 2,429
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
03-04-2010 02:31 PM Go to last post
52 310
Are you struggling with hormonal changes?? Are they bothering your bladder?? Need to vent about your body changing?? Do it here!
110 822
Discuss your thoughts and concerns about depression and anxiety here.
862 9,266
03-06-2010 04:41 AM Go to last post
432 3,561
by katie87
02-19-2010 10:54 AM Go to last post
344 2,752
If you're interested in stopping smoking and would like to support others, please post here! You can do it!
by SharonA
01-09-2010 07:56 AM Go to last post
164 1,657
Are you considering applying disability insurance? In the Appeals process? Post your questions here.
03-07-2010 09:06 AM Go to last post
707 5,240
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!
2,204 20,217
Are you in a flare? Need support? Post here!
Today 03:31 AM Go to last post
2,612 21,040
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 judy45
03-04-2010 06:00 AM Go to last post
580 5,115
What gets you motivated? Share your ideas and your wisdoms with others.
by nvl
01-26-2010 04:25 AM Go to last post
322 1,723
Related Conditions to Interstitial Cystitis
IC patients are 100 times more likely to have IBS. Do you? Discuss it here!
497 3,347
Discuss pudendal neuralgia and/or pudendal nerve entrapment here.
03-06-2010 04:41 AM Go to last post
70 416
Discuss fibromyalgia here.
by Katrina
03-04-2010 09:52 AM Go to last post
18 144
Urethral burning and pain can be very frustrating. Share your thoughts and coping strategies here.
03-07-2010 12:07 PM Go to last post
35 417
Vulvodynia (1 Viewing)
Female IC patients often have vulvodynia problems. Discuss this here!
785 6,054
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!
02-25-2010 04:50 PM Go to last post
124 819
273 2,366
Discuss other related conditions to IC here, such as CFIDS, endometriosis, lupus, back & leg pain here!
1,566 12,003
Pregnancy and Motherhood With Interstitial Cystitis
03-05-2010 08:32 AM Go to last post
350 2,326
Share your ideas for some child activities that you can do when your IC flaring.
12 40
03-06-2010 05:50 AM Go to last post
509 5,090
When a mother or wife develops IC, it can often impact how she feels about her abilities in those roles. Talk about it here!
02-03-2010 04:43 PM Go to last post
447 3,953
If you are an IC patient struggling with fertility, share your thoughts here!
by cem
03-06-2010 02:44 PM Go to last post
52 339
by JennyK
Yesterday 07:39 AM Go to last post
16 173
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? (3 Viewing)
Are you a newly diagnosed man? Meet others here!
03-06-2010 03:27 PM Go to last post
221 1,468
Single Life and IC
Here's a place to share your questions, ideas and strategies on dating with IC.
03-04-2010 03:46 PM Go to last post
19 142
by Kathi
03-01-2010 11:22 AM Go to last post
28 35
by katie87
03-06-2010 05:24 AM Go to last post
41 469
12-04-2009 06:01 PM Go to last post
12 90
by jeri l
03-06-2010 07:51 AM Go to last post
8 73
by SueP1
02-15-2010 12:43 PM Go to last post
10 67
by izazen
01-08-2010 04:20 PM Go to last post
13 151
Family & Friends Of Patients With Interstitial Cystitis
427 3,897
Discuss & Compare spouse/partner relations here
253 3,349
Yesterday 05:33 PM Go to last post
196 1,692
A special place where family members & friends can ask questions & support each other!
108 579
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!
03-03-2010 01:55 PM Go to last post
238 1,798
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!
301 2,926
One of the long standing debates is the validity of the KCL test to diagnose IC rather than the more intensive hydrodistention. What do you think?
2 21
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 aleet7
03-08-2010 04:37 AM Go to last post
75 680
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
11-24-2009 12:08 PM Go to last post
78 648
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!
- - -
Canada Chat (2 Viewing)
Meet others from Canada Here!
03-05-2010 07:48 PM Go to last post
132 888
10-21-2009 02:43 AM Go to last post
19 186
Meet other IC patients in the North East Area of our country: CT, DC, ME, MD, MA, NH, NJ, NY, PA, RI, VT
by suz z
03-03-2010 02:35 AM Go to last post
449 1,926
Meet others from the Southeastern states of our country: AL, DE, FL, GA, LA, MS, NC, SC, TN, VA, WV,
01-23-2010 05:04 PM Go to last post
466 2,334
Meet others in the Central (Plains) states of our country: AR, IL, IN, IA, KY, MI, MN, MO, OH, WI
by cem
03-06-2010 02:25 PM Go to last post
339 1,869
Meet others in the Southwestern states of our country: AZ, NV, UT, NM, TX
by momw/ic
01-25-2010 03:16 PM Go to last post
213 908
03-07-2010 02:29 PM Go to last post
138 618
Meet others in the Northwestern states of our country: AK, ID, MT, OR, WA
83 462
Meet others in the Midwest/Rocky Mountain states of our country: CO, KS, ND, NE, OK, SD, WY
by SharonA
02-22-2010 08:44 AM Go to last post
83 304
Australia (3 Viewing)
02-05-2010 12:21 PM Go to last post
197 2,013
20's CHAT
Are you a college student with interstitial cystitis? Meet other ICers and share strategies here!
01-29-2010 02:14 PM Go to last post
177 1,351
251 2,140
by Grinch
01-02-2010 02:12 PM Go to last post
125 1,200
30's & 40's
02-12-2010 10:20 AM Go to last post
234 2,265
50's CHAT
01-10-2010 01:42 PM Go to last post
176 1,131
SPIRITUALITY & FAITH
Prayer Requests (1 Viewing)
1,254 18,616
MISC.
198 1,616
02-15-2010 05:35 PM Go to last post
134 7,048
Share your funny YouTube and blog links here!! Please NO pornography. These are supposed to be funny, to help another IC patient laugh!!
by cem
03-07-2010 10:19 AM Go to last post
57 250
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
03-01-2010 11:21 AM Go to last post
123 596
Everyone loves a good movie. Share your recommendations here and discuss the latest movies, videos and TV shows!
by VickiB
02-18-2010 06:14 AM Go to last post
251 2,220
Bathroom Humor (2 Viewing)
Laughter is the best medicine! Help us laugh today. Share your funniest jokes and stories here!
626 4,317
Because IC is only a part of our lives.
1,823 17,847
A place to discuss an interesting book .... or share information about articles you've seen in recent magazines.
12-04-2009 06:05 PM Go to last post
107 735
Are you a WOW fan?? Want to hang out in an IC guild and make friends??
12-12-2009 01:20 PM Go to last post
10 103
Pets Welcome (1 Viewing)
A "Spot" for sharing pet "tails"
by Smokey
03-06-2010 01:20 PM Go to last post
478 4,761
BOARD MGT.
For Questions About BBS Management & TOS Inquiries
02-26-2010 01:01 PM Go to last post
137 764
EOSINOPHILIC CYSTITIS
The ICN is proud to host the Eosinophilic Cystitis Resource Center!
by 123456
12-08-2009 08:16 AM Go to last post
45 255


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