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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!
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
by kagey
Yesterday 11:13 AM Go to last post
23 64
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 SharonA
11-18-2009 10:50 AM Go to last post
436 3,504
Read the latest industry & research news on interstitial cystitis, painful bladder syndrome, pelvic floor dysfunction & overactive bladder here!
144 1,387
Review recent recalls of products, drugs and related materials
67 636
Jill's Journal (3 Viewing)
ICN Founder Jill offers daily comments on IC events, activities in the ICN office and more!
by Glenda2
Today 09:35 AM Go to last post
209 3,085
Are you a WOW fan?? Want to hang out in an IC guild and make friends??
by SharonA
11-07-2009 08:25 AM Go to last post
10 99
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!
68 694
Introduce Yourself and share your interstitial cystitis story here!
by Glenda2
Today 11:12 AM Go to last post
5,162 42,073
Share your Interstitial Cystitis Success Story Here
by icnow
11-16-2009 05:51 PM Go to last post
675 7,433
Share Your Interstitial Cystitis Story Here. When did it start for you? How did it begin?? What interstitial cystitis treatments worked for you?
Yesterday 03:40 PM Go to last post
2,120 18,266
Yes, remission happens and happens often for interstitial cystitis patients. If you're in remission, please share your story and success tips here!
by ICRN
11-15-2009 03:39 AM Go to last post
208 2,607
Dedicated to the memory of AuntieDebbieF, this board is a place your gratitudes. Please let your story cheer others!
by Glenda2
11-18-2009 05:23 AM Go to last post
741 6,598
by VickiB
10-21-2009 07:12 PM Go to last post
247 1,469
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!
Today 11:07 AM Go to last post
1,389 12,193
by kap
Yesterday 07:28 AM Go to last post
391 2,960
Do you suspect you have interstitial cystitis but haven't been diagnosed yet? Post here!
1,564 12,071
Symptoms of IC (2 Viewing)
by aleet7
Today 09:29 AM Go to last post
2,547 20,895
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!
Today 11:09 AM Go to last post
1,345 11,256
Discuss the use of Ditropan, Detrol, Urelle, Azo Pain Relief tablets here!
Today 05:25 AM Go to last post
104 688
Hydroxyzine (Vistaril & Atarax) is a vital therapy for interstitial cystitis. Discuss your success or questions here!
499 3,729
Antidepressants are often prescribed for long term pain management purposes. Discuss these here!
by Glenda2
Today 11:23 AM Go to last post
1,091 8,543
Discuss the use of food supplements here!
by DawnR
Yesterday 12:39 PM Go to last post
373 2,285
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.
Today 10:53 AM Go to last post
739 5,325
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
by kepage5
11-18-2009 05:02 PM Go to last post
487 4,269
Discuss DMSO, Cystistat, Heparin, Chlorpactin, Silver Nitrate, Lidocaine
by nottoc4
Today 06:26 AM Go to last post
1,023 7,743
185 1,152
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!
10-20-2009 02:00 PM Go to last post
289 2,572
For patients currently undergoing trial or surgical procedures.
by rjyoon
11-16-2009 04:55 PM Go to last post
357 3,649
Share your success stories here!
11-09-2009 10:19 AM Go to last post
260 1,858
For those who have tried neurostimulation and experienced complications or failure, this is a place to receive support.
11-16-2009 03:01 PM Go to last post
338 2,941
Nerve Blocks (3 Viewing)
Nerve blocks have occasionallhy been used for patient struggling with discomfort. Share your experience here!
62 357
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.
07-17-2009 12:35 PM Go to last post
44 781
11-10-2009 08:40 AM Go to last post
43 642
Learn more about treatments currently being studied.
by Jeff
10-17-2009 12:39 PM Go to last post
201 1,684
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.
11-14-2009 02:30 PM Go to last post
74 1,163
One of the great controversies in IC treatment. Discuss antibiotics here!
by nottoc4
Today 03:44 AM Go to last post
420 4,623
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
11-09-2009 03:19 PM Go to last post
126 1,136
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.
11-18-2009 05:35 PM Go to last post
489 6,020
17 210
This forum is for patients who have many issues going on besides IC that are contributing to their illness.
183 2,286
Miscellaneous Treatments For Interstitial Cystitis
For more information on these treatments, please visit the ICN Patient Handbook.
Alternative Therapies (2 Viewing)
Herbs, vitamins, supplements have been hotly debated. While none is considered a cure for IC, you can discuss them here.
by Landish
Yesterday 05:14 AM Go to last post
1,064 8,242
Other Treatments (4 Viewing)
by carjet
11-18-2009 04:15 PM Go to last post
764 5,219
Drug Costs & Expenses (1 Viewing)
Patients now struggle to afford many medications. Share your stories here.
138 1,066
The IC Diet
Discuss all things related to the IC diet here!
Ask questions about diet and interstitial cystitis IC/PBS here!
4,119 30,809
Share your favorite IC friendly recipes and menu ideas here!
270 1,822
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 07:19 PM Go to last post
338 2,388
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
11-14-2009 03:14 PM Go to last post
52 291
Are you struggling with hormonal changes?? Are they bothering your bladder?? Need to vent about your body changing?? Do it here!
11-17-2009 01:24 PM Go to last post
93 747
Depression & Anxiety (1 Viewing)
Discuss your thoughts and concerns about depression and anxiety here.
by maryla
Today 10:03 AM Go to last post
824 8,881
11-18-2009 07:25 PM Go to last post
421 3,450
Exercise & Fitness (1 Viewing)
11-17-2009 02:58 PM Go to last post
331 2,674
If you're interested in stopping smoking and would like to support others, please post here! You can do it!
by VickiB
Yesterday 05:43 PM Go to last post
164 1,628
Are you considering applying disability insurance? In the Appeals process? Post your questions here.
Yesterday 11:07 AM Go to last post
697 5,146
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 aleet7
Today 09:21 AM Go to last post
2,164 19,958
Are you in a flare? Need support? Post here!
Today 10:57 AM Go to last post
2,514 20,406
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 jvr
11-01-2009 06:20 PM Go to last post
573 5,093
Let's Get Motivated (1 Viewing)
What gets you motivated? Share your ideas and your wisdoms with others.
by Kathi
11-02-2009 10:02 AM Go to last post
319 1,693
Related Conditions to Interstitial Cystitis
IC patients are 100 times more likely to have IBS. Do you? Discuss it here!
Today 06:01 AM Go to last post
485 3,267
Discuss pudendal neuralgia and/or pudendal nerve entrapment here.
11-18-2009 12:40 PM Go to last post
67 390
Urethral burning and pain can be very frustrating. Share your thoughts and coping strategies here.
Yesterday 04:42 AM Go to last post
19 294
Vulvodynia (3 Viewing)
Female IC patients often have vulvodynia problems. Discuss this here!
750 5,767
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!
11-18-2009 05:14 AM Go to last post
124 802
11-16-2009 09:58 AM Go to last post
265 2,314
Discuss other related conditions to IC here, such as CFIDS, endometriosis, lupus, back & leg pain here!
Today 03:42 AM Go to last post
1,512 11,737
Pregnancy and Motherhood With Interstitial Cystitis
11-16-2009 09:26 AM Go to last post
345 2,354
Share your ideas for some child activities that you can do when your IC flaring.
by 123456
11-16-2009 01:01 PM Go to last post
9 16
I'm Pregnant! (3 Viewing)
Yesterday 09:28 AM Go to last post
495 4,982
When a mother or wife develops IC, it can often impact how she feels about her abilities in those roles. Talk about it here!
11-11-2009 10:05 AM Go to last post
442 3,921
If you are an IC patient struggling with fertility, share your thoughts here!
53 334
11-03-2009 05:07 PM Go to last post
15 150
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!
217 1,424
Single Life and IC
Here's a place to share your questions, ideas and strategies on dating with IC.
by 123456
10-17-2009 05:13 AM Go to last post
18 133
by Kathi
11-02-2009 10:00 AM Go to last post
21 28
Twenty Somethings (2 Viewing)
37 432
10-21-2009 02:52 AM Go to last post
11 89
by mary124
05-14-2009 07:38 AM Go to last post
6 67
by Cora
11-18-2009 10:52 AM Go to last post
8 50
Savvy Sixties & Above (1 Viewing)
10-23-2009 02:04 PM Go to last post
12 146
Family & Friends Of Patients With Interstitial Cystitis
by Nat_44
Yesterday 09:37 AM Go to last post
418 3,849
Discuss & Compare spouse/partner relations here
10-31-2009 05:41 PM Go to last post
250 3,301
by Kathi
11-02-2009 09:59 AM Go to last post
189 1,676
A special place where family members & friends can ask questions & support each other!
108 571
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 kadi
Yesterday 05:31 PM Go to last post
231 1,744
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!
by mary124
Yesterday 06:03 AM Go to last post
289 2,792
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?
by bluetou
11-11-2009 03:04 AM Go to last post
2 19
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 Julie B
11-07-2009 08:18 PM Go to last post
67 622
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
11-02-2009 05:23 AM Go to last post
79 648
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!
- - -
Meet others from Canada Here!
Today 01:36 AM Go to last post
124 851
10-21-2009 02:43 AM Go to last post
20 188
Meet other IC patients in the North East Area of our country: CT, DC, ME, MD, MA, NH, NJ, NY, PA, RI, VT
by markov
11-17-2009 02:42 PM Go to last post
443 1,897
Meet others from the Southeastern states of our country: AL, DE, FL, GA, LA, MS, NC, SC, TN, VA, WV,
by Judy777
11-17-2009 01:01 PM Go to last post
455 2,322
Meet others in the Central (Plains) states of our country: AR, IL, IN, IA, KY, MI, MN, MO, OH, WI
Today 02:41 AM Go to last post
339 1,851
Meet others in the Southwestern states of our country: AZ, NV, UT, NM, TX
by tegu4me
11-17-2009 10:49 PM Go to last post
211 904
Yesterday 02:52 PM Go to last post
133 569
Meet others in the Northwestern states of our country: AK, ID, MT, OR, WA
82 457
Meet others in the Midwest/Rocky Mountain states of our country: CO, KS, ND, NE, OK, SD, WY
11-10-2009 05:59 AM Go to last post
81 300
194 2,003
20's CHAT
Are you a college student with interstitial cystitis? Meet other ICers and share strategies here!
07-20-2009 07:21 PM Go to last post
176 1,345
by nottoc4
10-26-2009 10:25 AM Go to last post
241 2,075
by mary124
11-17-2009 12:21 PM Go to last post
125 1,204
30's & 40's
by nottoc4
Yesterday 06:29 AM Go to last post
230 2,224
50's CHAT
Over 50 Chat Board (1 Viewing)
by maryla
11-17-2009 02:42 PM Go to last post
176 1,123
SPIRITUALITY & FAITH
1,222 18,096
MISC.
by markov
Yesterday 11:24 AM Go to last post
194 1,584
07-19-2009 11:21 AM Go to last post
130 7,031
Share your funny YouTube and blog links here!! Please NO pornography. These are supposed to be funny, to help another IC patient laugh!!
by Julie B
09-10-2009 02:03 PM Go to last post
51 233
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
11-02-2009 09:57 AM Go to last post
116 589
Everyone loves a good movie. Share your recommendations here and discuss the latest movies, videos and TV shows!
242 2,180
Bathroom Humor (2 Viewing)
Laughter is the best medicine! Help us laugh today. Share your funniest jokes and stories here!
by VickiB
11-10-2009 01:23 PM Go to last post
620 4,292
Because IC is only a part of our lives.
Yesterday 03:21 AM Go to last post
1,802 17,643
A place to discuss an interesting book .... or share information about articles you've seen in recent magazines.
by ABliske
07-16-2009 07:22 AM Go to last post
106 734
Pets Welcome (3 Viewing)
A "Spot" for sharing pet "tails"
by 123456
11-16-2009 03:36 PM Go to last post
470 4,710
BOARD MGT.
For Questions About BBS Management & TOS Inquiries
by SueP1
Today 07:39 AM Go to last post
133 754
EOSINOPHILIC CYSTITIS
The ICN is proud to host the Eosinophilic Cystitis Resource Center!
by Melpot
10-06-2009 01:47 AM Go to last post
44 251


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