- Take a moment each day to say "I am proud of myself." YOU are working VERY hard to live your life with IC with dignity and respect. Have you rewarded yourself recently??
- YOUR WORDS have the power to inspire or discourage other patients. Whenever possible, write ENCOURAGING messages.
- Illnesses and injuries can create tremendous anxiety and uncertainty. If you are struggling with suicidal thoughts, please read this. You can also find great resources at: www.suicide.org


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ICN Support Forum - Interstitial Cystitis, Overactive Bladder, Pelvic Floor Dysfunction Statistics
ICN Support Forum - Interstitial Cystitis, Overactive Bladder, Pelvic Floor Dysfunction Statistics
Threads: 67,921, Posts: 555,391, Members: 52,340
Welcome to our newest member, RangMedia

Welcome to the ICN Support Forum - Interstitial Cystitis, Overactive Bladder, Pelvic Floor Dysfunction.
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 (4 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!
574 4,275
Read the latest research news on interstitial cystitis, painful bladder syndrome, pelvic floor dysfunction, prostatitis & overactive bladder here!
262 2,344
New announcements from the urology, medical and health care industry.
05-22-2012 05:05 AM Go to last post
67 599
Review recent recalls of products, drugs and related materials
110 940
by Katrina
05-21-2012 01:47 PM Go to last post
99 170
Jill's Journal (3 Viewing)
ICN Founder Jill offers daily comments on IC events, activities in the ICN office and more!
302 3,978
Help us raise awareness for IC!
30 223
Find the best books and resources in the ICN Shop, purchases from which support this free forum! Please shop with us!
04-11-2012 02:27 PM Go to last post
20 51
Patient Stories
Share Your Interstitial Cystitis Story Here. When did it start for you? How did it begin?? What interstitial cystitis treatments worked for you?
Today 02:45 PM Go to last post
3,405 27,383
Introduce Yourself and share your interstitial cystitis story here!
6,106 48,654
IC Success Stories (2 Viewing)
Share your Interstitial Cystitis Success Story Here
Today 03:40 PM Go to last post
859 9,255
Yes, remission happens and happens often for interstitial cystitis patients. If you're in remission, please share your story and success tips here!
Today 06:26 PM Go to last post
284 3,412
Are you a newly diagnosed man? Meet others here!
05-19-2012 12:00 PM Go to last post
306 2,197
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 tierney
04-16-2012 03:19 PM Go to last post
91 810
Just for high school students with IC
by tierney
05-18-2012 02:30 PM Go to last post
108 906
Are you a college student with interstitial cystitis? Meet other ICers and share strategies here!
by icgrrl
03-14-2012 07:19 PM Go to last post
237 1,841
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!
1,651 14,284
by nekura
05-21-2012 09:56 AM Go to last post
446 3,412
Do you suspect you have interstitial cystitis but haven't been diagnosed yet? Post here!
1,987 14,734
Symptoms of IC (30 Viewing)
by Kami
Yesterday 07:46 AM Go to last post
3,323 26,101
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!
05-13-2012 12:24 PM Go to last post
1,644 13,581
Discuss the use of Ditropan, Detrol, Urelle, Azo Pain Relief tablets here!
Yesterday 12:11 PM Go to last post
318 2,176
Hydroxyzine (Vistaril & Atarax) is a vital therapy for interstitial cystitis. Discuss your success or questions here!
by Nal
Yesterday 04:07 PM Go to last post
639 4,755
Antidepressants are often prescribed for long term pain management purposes. Discuss these here!
05-22-2012 10:39 AM Go to last post
1,376 10,498
Discuss the use of food supplements here!
654 3,873
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.
1,035 7,515
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 05:32 AM Go to last post
678 5,899
Discuss DMSO, Cystistat, Heparin, Chlorpactin, Silver Nitrate, Lidocaine
Yesterday 04:53 PM Go to last post
1,165 8,868
05-14-2012 03:08 PM Go to last post
209 1,313
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.
Discuss your experience with or questions about PTNS (i.e. SANS or Urgent PC) here!
by meagain
04-30-2012 04:37 PM Go to last post
11 113
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!
by Taramc
04-11-2012 12:26 PM Go to last post
333 2,898
For patients currently undergoing trial or surgical procedures.
393 3,944
Share your success stories here!
05-08-2012 11:54 AM Go to last post
278 2,005
For those who have tried neurostimulation and experienced complications or failure, this is a place to receive support.
361 3,099
Nerve Blocks (1 Viewing)
Nerve blocks have occasionallhy been used for patient struggling with discomfort. Share your experience here!
by Kirs10
05-21-2012 03:37 PM Go to last post
87 523
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.
05-19-2012 02:45 PM Go to last post
53 850
by Briza
01-24-2012 03:54 PM Go to last post
60 757
Are you participating in the current clinical trial? Share your thoughts here.
05-15-2012 07:01 AM Go to last post
3 78
Botox (2 Viewing)
Learn more about treatments currently being studied.
05-17-2012 08:14 AM Go to last post
233 1,906
One of the great controversies in IC treatment. Discuss antibiotics here!
05-22-2012 08:07 AM Go to last post
468 5,025
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
04-27-2012 08:14 PM Go to last post
135 1,211
Bladder Removal (5 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.
555 6,973
by Natty
12-13-2011 10:01 AM Go to last post
22 234
This forum is for patients who have many issues going on besides IC that are contributing to their illness.
by bladder
Yesterday 02:01 PM Go to last post
245 2,862
Miscellaneous Treatments For Interstitial Cystitis
For more information on these treatments, please visit the ICN Patient Handbook.
Alternative Therapies (6 Viewing)
Herbs, vitamins, supplements have been hotly debated. While none is considered a cure for IC, you can discuss them here.
by tierney
Yesterday 02:54 PM Go to last post
1,266 9,593
Other Treatments (8 Viewing)
875 5,910
The IC Diet
Discuss all things related to the IC diet here!
General Diet Questions (23 Viewing)
Ask questions about diet and interstitial cystitis IC/PBS here!
by kadi
Today 02:54 PM Go to last post
5,202 37,927
IC Diet: Recipes (8 Viewing)
Share your favorite IC friendly recipes and menu ideas here!
Today 02:10 AM Go to last post
798 3,867
18 132
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 GPat
03-04-2012 08:42 AM Go to last post
373 2,629
Read columns on the IC diet by Bev Laumann, author of "A Taste of the Good Life: A Cookbook for an IC Diet."
- - -
- - -
Self-Help For Interstitial Cystitis
05-11-2012 09:27 AM Go to last post
88 592
Are you struggling with hormonal changes?? Are they bothering your bladder?? Need to vent about your body changing?? Do it here!
169 1,226
Discuss your thoughts and concerns about depression and anxiety here.
:(
Today 03:20 PM Go to last post
1,036 10,665
05-09-2012 03:19 AM Go to last post
483 3,907
04-23-2012 07:39 PM Go to last post
399 3,088
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!
2,498 22,113
Are you in a flare? Need support? Post here!
by dg2901
Today 07:42 PM Go to last post
3,118 24,271
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!
03-21-2012 05:57 PM Go to last post
615 5,399
Related Conditions to Interstitial Cystitis
IC patients are 100 times more likely to have IBS. Do you? Discuss it here!
558 3,729
Discuss pudendal neuralgia and/or pudendal nerve entrapment here.
04-03-2012 06:39 AM Go to last post
105 588
Discuss fibromyalgia here.
05-22-2012 11:08 AM Go to last post
68 509
Urethral burning and pain can be very frustrating. Share your thoughts and coping strategies here.
by JJbean
Yesterday 08:51 AM Go to last post
92 922
Vulvodynia (4 Viewing)
Female IC patients often have vulvodynia problems. Discuss this here!
05-22-2012 06:19 PM Go to last post
872 6,588
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!
03-11-2012 04:58 PM Go to last post
136 884
310 2,581
Discuss other related conditions to IC here, such as CFIDS, endometriosis, lupus, back & leg pain here!
Yesterday 11:09 AM Go to last post
1,763 13,040
Pregnancy and Motherhood With Interstitial Cystitis
05-07-2012 08:04 AM Go to last post
395 2,608
Children's Activities (1 Viewing)
Share your ideas for some child activities that you can do when your IC flaring.
by Katrina
12-15-2011 08:29 AM Go to last post
21 58
I'm Pregnant! (3 Viewing)
Today 08:46 AM Go to last post
607 5,805
When a mother or wife develops IC, it can often impact how she feels about her abilities in those roles. Talk about it here!
468 4,055
If you are an IC patient struggling with fertility, share your thoughts here!
03-04-2012 09:09 AM Go to last post
58 371
Health Insurance Discussions
Are you struggling with health insurance? Don't have insurance?? Looking for drug assistance programs??
Is this a can of worms or what?? Ask questions or discuss any issues you might have with your health insurance coverage
by mary124
05-21-2012 07:02 AM Go to last post
12 73
Are you in the military and seeking care?
03-24-2012 01:54 AM Go to last post
3 39
Some medications are available at no cost through pharmaceutical companies. Share your experiences or questions here!
02-29-2012 07:53 AM Go to last post
6 23
by mary124
04-30-2012 10:44 AM Go to last post
254 1,538
Share your ideas with others on getting health care if you lack coverage. Free clinics?? Pay per visit?? How are you coping?
by DebbieT
01-21-2012 03:49 AM Go to last post
2 20
Social Security Q&A (1 Viewing)
Are you considering applying disability insurance? In the Appeals process? Post your questions here.
by hollyf
Today 03:15 AM Go to last post
762 5,617
Social Life - Family, Friends, Dating
05-17-2012 03:22 PM Go to last post
172 1,364
05-22-2012 07:22 PM Go to last post
1,272 11,827
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!
334 3,332
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 maryla
05-04-2012 05:51 AM Go to last post
2 39
MEET OTHERS BY REGION
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.
US States (5 Viewing)
Find patients in your neck of the woods!
1,927 9,426
Click here to view our database of support groups and medical care providers.
- - -
Meet others from Canada Here!
170 1,204
SPIRITUALITY, FAITH & POSITIVITY
Prayer Requests (2 Viewing)
05-04-2012 10:26 PM Go to last post
1,357 19,520
Dedicated to the memory of AuntieDebbieF, this board is a place your gratitudes. Please let your story cheer others!
03-23-2012 09:24 AM Go to last post
757 6,676
The Happiness Corner (3 Viewing)
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 Kami
Yesterday 02:25 AM Go to last post
119 1,183
MISC.
Career Concerns & IC (1 Viewing)
by tierney
05-20-2012 08:50 AM Go to last post
233 1,851
by h808
01-17-2012 08:05 PM Go to last post
145 7,128
Share your funny YouTube and blog links here!! Please NO pornography. These are supposed to be funny, to help another IC patient laugh!!
by bubbe1
05-02-2012 07:38 AM Go to last post
81 303
Everyone loves a good movie. Share your recommendations here and discuss the latest movies, videos and TV shows!
02-15-2012 06:09 AM Go to last post
274 2,348
Bathroom Humor (1 Viewing)
Laughter is the best medicine! Help us laugh today. Share your funniest jokes and stories here!
by JanieBA
04-24-2012 12:42 AM Go to last post
669 4,483
Because IC is only a part of our lives.
1,985 19,147
A place to discuss an interesting book .... or share information about articles you've seen in recent magazines.
04-13-2012 03:30 PM Go to last post
119 796
Pets Welcome (3 Viewing)
A "Spot" for sharing pet "tails"
by mary124
05-08-2012 10:38 AM Go to last post
528 5,255
BOARD MGT.
For Questions About BBS Management & TOS Inquiries
by Kami
Today 09:29 AM Go to last post
171 879
EOSINOPHILIC CYSTITIS
The ICN is proud to host the Eosinophilic Cystitis Resource Center!
47 269


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