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Interstitial Cystitis Network Patient Support Forum

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Directory Topics Posts Last Post
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: 1,847 Posts: 9,042
1,847 9,042
Jill's Journal (325/4,160)
Patient Stories
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: 13 Posts: 123
13 123
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: 30 Posts: 293
30 293
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: 6,840 Posts: 46,833
6,840 46,833
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: 60 Posts: 329
60 329
Newly Diagnosed With Interstitial Cystitis
Introduce Yourself and share your interstitial cystitis story here!
Topics: 7,193 Posts: 56,703
7,193 56,703
IC Success Stories
Share your Interstitial Cystitis Success Story Here
Topics: 1,208 Posts: 12,887
1,208 12,887
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: 41 Posts: 212
41 212
Men with Interstitial Cystitis
Are you a newly diagnosed man? Meet others here!
Topics: 490 Posts: 3,566
490 3,566
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: 421 Posts: 5,046
421 5,046
Diagnostic Methods For Interstitial Cystitis
General Diagnostic Questions
Ask questions about the diagnosis of IC, PFD and pelvic pain here!
Topics: 3,172 Posts: 19,109
3,172 19,109
Not Diagnosed Yet with Interstitial Cystitis?
Do you suspect you have interstitial cystitis but haven't been diagnosed yet? Post here!
Topics: 2,595 Posts: 19,143
2,595 19,143
Topics: 4,137 Posts: 31,724
4,137 31,724
Treatment Options
Medical Marijuana and CBD
Share your experience using medical marijuana and/or CBD oil to relieve your symptoms.
Topics: 15 Posts: 167
15 167
Oral Medications
Oral medications are usually the first treatment options suggested for patients with mild to moderate bladder symptoms and/or pain.
Topics: 6,378 Posts: 40,684
6,378 40,684
Bladder Instillation Therapy
Bladder instillations are often performed for mild, moderate and, in some cases, severe IC.
Topics: 2,213 Posts: 16,076
2,213 16,076
Topics: 1,312 Posts: 9,419
1,312 9,419
Topics: 1,871 Posts: 14,878
1,871 14,878
T.E.N.S Therapy (224/1,382)
Nerve Blocks (103/629)
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: 1,092 Posts: 13,407
1,092 13,407
Bladder Removal (624/8,637)
Nerve Ablation (24/258)
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: 3,458 Posts: 28,347
3,458 28,347
Alternative Therapies (1,444/10,596)
Cyclosporine (60/919)
Botox (298/2,570)
Other Treatments (958/6,422)
The IC Diet
General Diet Questions
Ask questions about diet and interstitial cystitis IC/PBS here!
Topics: 6,641 Posts: 46,183
Last Post:
6,641 46,183
by Ruthdob
IC Diet: Recipes
Share your favorite IC friendly recipes and menu ideas here!
Topics: 1,323 Posts: 3,232
Last Post:
1,323 3,232
Jay Phoenix
Main Dishes (151/499)
Casseroles (12/55)
Salads and Soups (80/214)
Desserts (152/394)
Hot Drinks (85/413)
Cold Drinks (81/287)
Cookies & Candy (50/190)
Cocktails (3/27)
Topics: 62 Posts: 195
Last Post:
62 195
Breakfast (7/32)
Dinner (4/15)
Lunch (4/28)
Holidays (12/91)
Self-Help For Interstitial Cystitis
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: 297 Posts: 1,948
297 1,948
by bhonas
Topics: 187 Posts: 1,125
187 1,125
Depression & Anxiety
Discuss your thoughts and concerns about depression and anxiety here.
Topics: 1,235 Posts: 12,428
1,235 12,428
Topics: 591 Posts: 4,579
591 4,579
Topics: 483 Posts: 3,608
Last Post:
483 3,608
Managing Interstitial Cystitis Flares
Pain Management For Interstitial Cystitis
Discuss pain management strategies here!
Topics: 2,764 Posts: 23,736
2,764 23,736
Help! I'm in an interstitial cystitis flare!
Are you in a flare? Need support? Post here!
Topics: 3,814 Posts: 28,843
Last Post:
3,814 28,843
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: 650 Posts: 5,755
650 5,755
Related Conditions to Interstitial Cystitis
IC & Other Related Conditions
Research has demonstrated a clear connection between IC, IBS, vulvodynia, prostatodynia and other related conditions. Discuss them here!
Topics: 4,432 Posts: 31,000
4,432 31,000
by Kibell
Fibromyalgia (92/604)
Vulvodynia (942/6,885)
Dry Eyes/Dry Mouth (141/906)
Fungal Infections (339/2,766)
Other Related Conditions (1,890/13,840)
Pregnancy and Parenting With Interstitial Cystitis
Topics: 1,218 Posts: 6,843
Last Post:
1,218 6,843
I'm Pregnant! (695/6,385)
Infertility (63/397)
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
481 4,111
Health Insurance & Disability Benefits
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: 142
34 142
by echloe
Topics: 272 Posts: 1,629
272 1,629
Social Security Disability Q&A
Are you considering applying disability insurance? In the Appeals process? Post your questions here.
Topics: 805 Posts: 5,904
805 5,904
Social Life - Family, Friends, Dating
Topics: 223 Posts: 1,669
223 1,669
Dating with IC (49/363)
Topics: 1,410 Posts: 12,700
Last Post:
1,410 12,700
Chris Schultz
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: 402 Posts: 3,888
Last Post:
402 3,888

What's Going On


There are currently 2522 users online. 1 members and 2521 guests.

Most users ever online was 157,401 at 04:30 AM on 12-24-2020.

IC Patient Support Forum - Interstitial Cystitis, Bladder & Pelvic Pain Statistics


Topics: 83,205   Posts: 627,463   Members: 52,772   Active Members: 79
Welcome to our newest member, emilyknits.

Our New Book




  • Anya
    Anyone from Malta or Mediterranean?
    by Anya
    Hi, just wanted to check if there is anyone around from Malta or any other mediterranean country suffering from IC. I am going crazy here. No IC treatment or decent doctors. Think gonna order some pills from America. Expensive shipping, but I am ready for almost anything to smoothen up my IC (if it...
    07-22-2006, 11:45 AM
  • birchwood777
    Elmiron and Crohns Disease
    by birchwood777
    Just wondering if anyone has experienced a Crohns diagnosis after taking Elmiron and what helped when they tried to stop taking it. I have been on Elmiron for over 20 years and was diagnosed with Crohns approximately 15 years ago. Although there's no proof of any connection, I feel it's too risky...
    09-19-2023, 05:09 AM

Latest Topics


  • birchwood777
    Elmiron and Crohns Disease
    by birchwood777
    Just wondering if anyone has experienced a Crohns diagnosis after taking Elmiron and what helped when they tried to stop taking it. I have been on Elmiron for over 20 years and was diagnosed with Crohns approximately 15 years ago. Although there's no proof of any connection, I feel it's too risky...
    09-19-2023, 05:09 AM
  • NKC
    online pharmacy for instillation ingredients for CA
    by NKC
    When I lived in Georgia my Dr. had it all set up, but the pharmacy he uses doesn't deliver to California and I can't find one that does. Apparently in the SF Bay area self-instillations are so rare the doctors offices don't know how to source it.. Where are you getting your instillation ingredie...
    09-13-2023, 05:54 AM
  • HoneyGirl
    UTI And Flare
    by HoneyGirl
    I began having symptoms about two weeks ago. AZO strip tested positive for leukocytes, negative for nitrates. I went to Urgent Care and the NP ordered 7 days of Keflex 500mg twice a day. She ran a culture which was negative for bacteria. I finished the Rx yesterday, but the flare continues. Why does...
    09-10-2023, 10:05 AM