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ICN Announcements
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!
Topics: 1,840
Posts: 9,039
Last Post:
How are you coping?
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1,840 | 9,039 |
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| Patient Stories | ||||||||||||||||||
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Chronic Infection - Fungal/Bacterial
There is considerable debate and discussion about the role of chronic infection in IC. Whether you are a fan of Dr. Fuzzy or Dr. Malone-Lee, please feel free to share your story here.
Topics: 2
Posts: 49
Last Post:
Could IC be caused by Chronic Infection?
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2 | 49 |
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Elmiron / Eye Discussions
Researchers at the Emory Eye Center have discovered maculopathy in SOME patients with IC who have taken Elmiron for long periods of time. Share your story here.
Topics: 19
Posts: 220
Last Post:
New study on elmiron eye damage
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19 | 220 |
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Introduce yourself and share your story
Share Your Interstitial Cystitis Story Here. When did it start for you? How did it begin?? What interstitial cystitis treatments worked for you?
Topics: 6,732
Posts: 46,362
Last Post:
why the drop in people responding???
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6,732 | 46,362 |
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Pain Care Challenges (Share Your Story!)
With pain care now greatly limited, we're collecting stories from patients who are struggling to find pain care and/or who are treated with disrespect. Please tell us your story!
Topics: 43
Posts: 223
Last Post:
Pain relief
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43 | 223 |
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Newly Diagnosed With Interstitial Cystitis
Introduce Yourself and share your interstitial cystitis story here!
Topics: 7,178
Posts: 56,648
Last Post:
ICN posting guidelines
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7,178 | 56,648 |
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IC Success Stories
Share your Interstitial Cystitis Success Story Here
Topics: 1,195
Posts: 12,808
Last Post:
Whitmore Bladder Cocktail
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1,195 | 12,808 |
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IC Veterans (5+ years living with IC)
This forum is for patients who have been living with IC for more than five years, who have wisdom to share but who also need support and encouragement
Topics: 33
Posts: 169
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33 | 169 |
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Men with Interstitial Cystitis
Are you a newly diagnosed man? Meet others here!
Topics: 478
Posts: 3,508
Last Post:
iron supplement
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478 | 3,508 |
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My Interstitial Cystitis Is In Remission!
Yes, remission happens and happens often for interstitial cystitis patients. If you're in remission, please share your story and success tips here!
Topics: 417
Posts: 5,027
Last Post:
My IC is in Remission!
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417 | 5,027 |
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| Diagnostic Methods For Interstitial Cystitis | ||||||||||||||||||
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General Diagnostic Questions
Ask questions about the diagnosis of IC, PFD and pelvic pain here!
Topics: 3,157
Posts: 19,091
Last Post:
Can't pinpoint pain or not
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3,157 | 19,091 |
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Not Diagnosed Yet with Interstitial Cystitis?
Do you suspect you have interstitial cystitis but haven't been diagnosed yet? Post here!
Topics: 2,584
Posts: 18,983
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2,584 | 18,983 |
by akash796
07-27-2020, 07:07 PM
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Topics: 4,115
Posts: 31,634
Last Post:
Being active can cause issues ?
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4,115 | 31,634 |
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| Treatment Options | ||||||||||||||||||
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Medical Marijuana and CBD
Share your experience using medical marijuana and/or CBD oil to relieve your symptoms.
Topics: 14
Posts: 158
Last Post:
Rolling my CBD
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14 | 158 |
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Oral Medications
Oral medications are usually the first treatment options suggested for patients with mild to moderate bladder symptoms and/or pain.
Topics: 6,348
Posts: 40,619
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6,348 | 40,619 |
by ICNDonna
07-31-2020, 07:05 AM
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Bladder Instillation Therapy
Bladder instillations are often performed for mild, moderate and, in some cases, severe IC.
Topics: 2,197
Posts: 16,027
Last Post:
First Instillation...
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2,197 | 16,027 |
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Topics: 1,307
Posts: 9,397
Last Post:
Valium?
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1,307 | 9,397 |
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Topics: 1,868
Posts: 14,870
Last Post:
Have had success— Have question
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1,868 | 14,870 |
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Surgical Interventions
Surgery is only considered after a patient has tried all of the other traditional therapies and is reserved for the most severe cases.
Topics: 1,087
Posts: 13,371
Last Post:
Facing bladder removal
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1,087 | 13,371 |
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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.
Topics: 3,452
Posts: 28,326
Last Post:
Please help!! Advice needed
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3,452 | 28,326 |
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| The IC Diet | ||||||||||||||||||
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General Diet Questions
Ask questions about diet and interstitial cystitis IC/PBS here!
Topics: 6,618
Posts: 46,058
Last Post:
Vitamins yes or no?
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6,618 | 46,058 |
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IC Diet: Recipes
Share your favorite IC friendly recipes and menu ideas here!
Topics: 1,315
Posts: 3,204
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1,315 | 3,204 |
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Topics: 62
Posts: 193
Last Post:
Veggie Smoothies
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62 | 193 |
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| Self-Help For Interstitial Cystitis | ||||||||||||||||||
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PMS, Perimenopause, Menopause
Are you struggling with hormonal changes?? Are they bothering your bladder?? Need to vent about your body changing?? Do it here!
Topics: 291
Posts: 1,931
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291 | 1,931 |
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Topics: 187
Posts: 1,125
Last Post:
Coping with all that's going on in our world
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187 | 1,125 |
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Depression & Anxiety
Discuss your thoughts and concerns about depression and anxiety here.
Topics: 1,229
Posts: 12,401
Last Post:
Lexapro and other SSRI Effects?
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1,229 | 12,401 |
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Topics: 586
Posts: 4,558
Last Post:
Estriol or Estradiol? I’m confused.
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586 | 4,558 |
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Topics: 478
Posts: 3,592
Last Post:
Swimming
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| Managing Interstitial Cystitis Flares | ||||||||||||||||||
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Pain Management For Interstitial Cystitis
Discuss pain management strategies here!
Topics: 2,759
Posts: 23,717
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2,759 | 23,717 |
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Help! I'm in an interstitial cystitis flare!
Are you in a flare? Need support? Post here!
Topics: 3,789
Posts: 28,724
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3,789 | 28,724 |
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Flare Coping Strategies For Interstitial Cystitis
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!
Topics: 646
Posts: 5,722
Last Post:
How to ease flare from antibiotic?
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646 | 5,722 |
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| Related Conditions to Interstitial Cystitis | ||||||||||||||||||
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IC & Other Related Conditions
Research has demonstrated a clear connection between IC, IBS, vulvodynia, prostatodynia and other related conditions. Discuss them here!
Topics: 4,416
Posts: 30,957
Last Post:
How to hold a job with ibs
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4,416 | 30,957 |
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| Pregnancy and Parenting With Interstitial Cystitis | ||||||||||||||||||
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Topics: 1,213
Posts: 6,834
Last Post:
Can IC cause miscarriage?
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1,213 | 6,834 |
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Parenting with IC
When a mother or wife develops IC, it can often impact how she feels about her abilities in those roles. Talk about it here!
Topics: 481
Posts: 4,111
Last Post:
Statistics for our kids getting this?
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481 | 4,111 |
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| Health Insurance & Disability Benefits | ||||||||||||||||||
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Health Insurance
Is this a can of worms or what?? Ask questions or discuss any issues you might have with your health insurance coverage
Topics: 34
Posts: 141
Last Post:
Does MediCal cover Elmiron?
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34 | 141 |
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Topics: 272
Posts: 1,629
Last Post:
This post is for you Donna :-)
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272 | 1,629 |
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Social Security Disability Q&A
Are you considering applying disability insurance? In the Appeals process? Post your questions here.
Topics: 805
Posts: 5,904
Last Post:
Live Disability Application Journey
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805 | 5,904 |
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| Social Life - Family, Friends, Dating | ||||||||||||||||||
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Topics: 222
Posts: 1,667
Last Post:
Relationship probably not going to last
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222 | 1,667 |
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Topics: 1,406
Posts: 12,691
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1,406 | 12,691 |
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| GREAT DEBATES | ||||||||||||||||||
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What do you think causes Interstitial Cystitis?
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!
Topics: 401
Posts: 3,879
Last Post:
Atypical Cause of IC Symptoms?
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401 | 3,879 |
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There are currently 2308 users online. 18 members and 2290 guests.
Most users ever online was 32,261 at 06:00 AM on 08-31-2011.
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I have been here a maybe five years and the number of people on this forum is terrible. If you look back to the 2000-2015 time period there were so many people helping each other. What could have possibly happened to the old guard? I know people come and go but the wealth of veterans that used to...08-03-2020, 08:03 AM
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I had been taking Norco for over a year when I reached tolerance and it stopped working. I was placed on Oxy. Did nothing. Then tramadol. Maybe 25% relief. Was just given MSIR (Morphine Sulfate Immediate Release yesterday). It is doing ABSOLUTELY nothing. I believe I am sensitized to it and many other...06-27-2020, 05:39 AM
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I was doing fine for about 2 years. I was doing instills every two weeks of 40,000U of heparin. I also had lidocaine but did not need it. I was also taking daily supplement of 120mg Vit C, 500mg Glucosamine Sulfate, 1600mg Collagen Type II, 400mg Chondroitin Sulfate and 200mg of Hyaluroni Acid and 200mg...07-22-2020, 03:20 AM
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Hi - I am having a pretty bad flare of IC and not sure what medication works best for pain. I had two bladder treatments last week and going in for another tomorrow. My primary doctor had given me a weeks worth of tramadol but took my last one this morning. I thought I could tough it out until tomorrow...08-04-2020, 07:24 AM
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Hi - I am having a pretty bad flare of IC and not sure what medication works best for pain. I had two bladder treatments last week and going in for another tomorrow. My primary doctor had given me a weeks worth of tramadol but took my last one this morning. I thought I could tough it out until tomorrow...08-04-2020, 07:24 AM
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I have been here a maybe five years and the number of people on this forum is terrible. If you look back to the 2000-2015 time period there were so many people helping each other. What could have possibly happened to the old guard? I know people come and go but the wealth of veterans that used to...08-03-2020, 08:03 AM
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So I was going through records one day from my old primary and saw that age 6 I was complaining about my bladder. I'm 34 now and it is horrific. I've been doing long term abx and I'm getting such severe side effects I have to stop the third one I've been put on, all I do is sleep. So basically on the...07-29-2020, 11:19 AM
