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ICN - Interstitial cystitis information & support Statistics
ICN - Interstitial cystitis information & support Statistics
Threads: 54,887, Posts: 464,942, Members: 37,823
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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!
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!
11-05-2009 12:16 PM Go to last post
431 3,495
Read the latest industry & research news on interstitial cystitis, painful bladder syndrome, pelvic floor dysfunction & overactive bladder here!
10-26-2009 12:45 PM Go to last post
143 1,370
Review recent recalls of products, drugs and related materials
66 625
Jill's Journal (1 Viewing)
ICN Founder Jill offers daily comments on IC events, activities in the ICN office and more!
by aleet7
11-01-2009 10:28 AM Go to last post
204 3,058
Are you a WOW fan?? Want to hang out in an IC guild and make friends??
by Kathi
11-02-2009 10:04 AM Go to last post
10 97
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!
Yesterday 11:04 PM Go to last post
63 590
Introduce Yourself and share your interstitial cystitis story here!
Yesterday 06:25 PM Go to last post
5,136 41,852
Share your Interstitial Cystitis Success Story Here
by Landish
11-03-2009 12:42 PM Go to last post
671 7,403
Share Your Interstitial Cystitis Story Here. When did it start for you? How did it begin?? What interstitial cystitis treatments worked for you?
11-04-2009 03:59 PM Go to last post
2,099 18,020
Yes, remission happens and happens often for interstitial cystitis patients. If you're in remission, please share your story and success tips here!
10-30-2009 03:12 PM Go to last post
207 2,590
Dedicated to the memory of AuntieDebbieF, this board is a place your gratitudes. Please let your story cheer others!
by mary124
11-04-2009 07:11 AM Go to last post
741 6,590
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!
1,377 12,058
by 123456
Yesterday 03:29 PM Go to last post
391 2,949
Do you suspect you have interstitial cystitis but haven't been diagnosed yet? Post here!
by ddktt
Yesterday 02:40 PM Go to last post
1,554 11,983
Symptoms of IC (6 Viewing)
by Valblue
Yesterday 09:32 PM Go to last post
2,534 20,754
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!
11-05-2009 12:29 PM Go to last post
1,334 11,170
Discuss the use of Ditropan, Detrol, Urelle, Azo Pain Relief tablets here!
by 123456
Yesterday 03:45 PM Go to last post
101 650
Hydroxyzine (Vistaril & Atarax) is a vital therapy for interstitial cystitis. Discuss your success or questions here!
by Bojana
Yesterday 02:08 AM Go to last post
496 3,679
Antidepressants are often prescribed for long term pain management purposes. Discuss these here!
11-05-2009 03:49 PM Go to last post
1,085 8,479
Discuss the use of food supplements here!
11-04-2009 01:12 PM Go to last post
358 2,182
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 123456
11-03-2009 10:54 AM Go to last post
728 5,273
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
11-05-2009 05:37 PM Go to last post
484 4,240
Discuss DMSO, Cystistat, Heparin, Chlorpactin, Silver Nitrate, Lidocaine
Yesterday 05:11 PM Go to last post
1,021 7,705
by Glenda2
10-20-2009 03:32 PM Go to last post
185 1,146
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.
Yesterday 09:30 AM Go to last post
357 3,648
Share your success stories here!
by NCIC
09-23-2009 11:51 AM Go to last post
259 1,856
For those who have tried neurostimulation and experienced complications or failure, this is a place to receive support.
Yesterday 09:34 AM Go to last post
337 2,934
Nerve Blocks (1 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
by Grammy
11-05-2009 10:08 AM Go to last post
42 640
Botox (1 Viewing)
Learn more about treatments currently being studied.
by Jeff
10-17-2009 12:39 PM Go to last post
201 1,684
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.
11-04-2009 11:38 AM Go to last post
74 1,161
One of the great controversies in IC treatment. Discuss antibiotics here!
by mary124
11-04-2009 11:06 AM Go to last post
419 4,603
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 CathyKi
10-31-2009 04:46 PM Go to last post
125 1,129
Bladder Removal (2 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 05:35 PM Go to last post
488 5,985
17 210
This forum is for patients who have many issues going on besides IC that are contributing to their illness.
by Skynard
11-04-2009 12:50 PM Go to last post
183 2,259
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 em1
11-05-2009 02:36 AM Go to last post
1,061 8,215
Other Treatments (2 Viewing)
by bluetou
11-05-2009 10:27 AM Go to last post
763 5,213
Patients now struggle to afford many medications. Share your stories here.
10-27-2009 09:43 AM Go to last post
138 1,062
The IC Diet
Discuss all things related to the IC diet here!
Ask questions about diet and interstitial cystitis IC/PBS here!
by mary124
Yesterday 11:38 AM Go to last post
4,097 30,606
Share your favorite IC friendly recipes and menu ideas here!
by kadi
Yesterday 06:24 PM Go to last post
264 1,763
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 nottoc4
10-19-2009 11:15 AM Go to last post
335 2,375
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 MiLynn
11-05-2009 01:57 PM Go to last post
51 270
Are you struggling with hormonal changes?? Are they bothering your bladder?? Need to vent about your body changing?? Do it here!
10-18-2009 04:32 PM Go to last post
93 744
Depression & Anxiety (1 Viewing)
Discuss your thoughts and concerns about depression and anxiety here.
Yesterday 01:46 PM Go to last post
818 8,819
Yesterday 06:22 PM Go to last post
419 3,417
Exercise & Fitness (1 Viewing)
330 2,656
If you're interested in stopping smoking and would like to support others, please post here! You can do it!
07-05-2009 08:02 AM Go to last post
164 1,625
Are you considering applying disability insurance? In the Appeals process? Post your questions here.
11-05-2009 12:42 PM Go to last post
697 5,125
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!
Yesterday 04:57 AM Go to last post
2,163 19,933
Are you in a flare? Need support? Post here!
2,502 20,318
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!
481 3,236
Discuss pudendal neuralgia and/or pudendal nerve entrapment here.
???
by Grammy
11-05-2009 10:24 AM Go to last post
66 385
Urethral burning and pain can be very frustrating. Share your thoughts and coping strategies here.
by sully02
11-04-2009 09:26 AM Go to last post
17 286
Vulvodynia (4 Viewing)
Female IC patients often have vulvodynia problems. Discuss this here!
Yesterday 03:03 PM Go to last post
745 5,733
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!
10-31-2009 10:42 AM Go to last post
124 799
by Katrina
11-01-2009 06:54 PM Go to last post
265 2,310
Discuss other related conditions to IC here, such as CFIDS, endometriosis, lupus, back & leg pain here!
11-05-2009 08:58 PM Go to last post
1,502 11,666
Pregnancy and Motherhood With Interstitial Cystitis
11-04-2009 08:16 AM Go to last post
345 2,347
Share your ideas for some child activities that you can do when your IC flaring.
10-24-2009 03:42 AM Go to last post
7 11
I'm Pregnant! (1 Viewing)
by SharonA
11-05-2009 06:58 AM Go to last post
490 4,958
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 SharonA
11-03-2009 07:35 AM Go to last post
441 3,918
If you are an IC patient struggling with fertility, share your thoughts here!
by mouse
10-11-2009 12:36 PM Go to last post
52 327
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!
Newly Diagnosed Man? (1 Viewing)
Are you a newly diagnosed man? Meet others here!
217 1,423
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
Yesterday 01:28 PM Go to last post
37 428
11 89
by mary124
05-14-2009 07:38 AM Go to last post
6 67
10-05-2009 03:40 AM Go to last post
7 46
10-23-2009 02:04 PM Go to last post
12 146
Family & Friends Of Patients With Interstitial Cystitis
418 3,838
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 VickiB
11-02-2009 10:02 AM Go to last post
230 1,735
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 sully02
11-01-2009 07:43 AM Go to last post
288 2,775
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?
10-15-2009 04:40 AM Go to last post
2 17
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!
Yesterday 03:27 AM Go to last post
67 621
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!
10-30-2009 05:56 PM Go to last post
121 836
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
11-04-2009 07:28 AM Go to last post
441 1,895
Meet others from the Southeastern states of our country: AL, DE, FL, GA, LA, MS, NC, SC, TN, VA, WV,
11-03-2009 03:11 PM Go to last post
453 2,319
Meet others in the Central (Plains) states of our country: AR, IL, IN, IA, KY, MI, MN, MO, OH, WI
by tamakat
Yesterday 01:52 PM Go to last post
338 1,845
Meet others in the Southwestern states of our country: AZ, NV, UT, NM, TX
by Julie B
11-03-2009 07:30 PM Go to last post
210 902
by SharonA
09-27-2009 08:28 AM Go to last post
132 567
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
11-04-2009 05:26 PM Go to last post
80 297
10-04-2009 12:45 PM Go to last post
194 2,000
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 SharonA
11-05-2009 07:06 AM Go to last post
125 1,203
30's & 40's
by mary124
11-04-2009 07:32 AM Go to last post
229 2,217
50's CHAT
08-12-2009 09:59 PM Go to last post
175 1,116
SPIRITUALITY & FAITH
1,219 18,076
MISC.
10-22-2009 04:20 AM Go to last post
194 1,581
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
Movie & TV Chats (1 Viewing)
Everyone loves a good movie. Share your recommendations here and discuss the latest movies, videos and TV shows!
by SharonA
11-04-2009 07:35 AM Go to last post
241 2,171
Laughter is the best medicine! Help us laugh today. Share your funniest jokes and stories here!
11-05-2009 02:58 AM Go to last post
618 4,288
Because IC is only a part of our lives.
by Julie B
11-04-2009 07:51 AM Go to last post
1,798 17,628
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
A "Spot" for sharing pet "tails"
by jessied
10-22-2009 06:17 AM Go to last post
467 4,682
BOARD MGT.
For Questions About BBS Management & TOS Inquiries
11-03-2009 01:01 PM Go to last post
132 753
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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