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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: 1,842 Posts: 9,039
1,842 9,039
Jill's Journal (324/4,157)
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: 7 Posts: 70
7 70
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: 27 Posts: 275
27 275
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: 6,748 Posts: 46,434
Last Post: Desperate
6,748 46,434
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: 44 Posts: 240
Last Post: Flare after I eat
44 240
Newly Diagnosed With Interstitial Cystitis
Introduce Yourself and share your interstitial cystitis story here!
Topics: 7,180 Posts: 56,652
7,180 56,652
IC Success Stories
Share your Interstitial Cystitis Success Story Here
Topics: 1,202 Posts: 12,837
1,202 12,837
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: 35 Posts: 186
35 186
Men with Interstitial Cystitis
Are you a newly diagnosed man? Meet others here!
Topics: 480 Posts: 3,528
Last Post: Ejaculation = flare
480 3,528
by BillB
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: 418 Posts: 5,029
418 5,029
Diagnostic Methods For Interstitial Cystitis
General Diagnostic Questions
Ask questions about the diagnosis of IC, PFD and pelvic pain here!
Topics: 3,160 Posts: 19,098
3,160 19,098
Not Diagnosed Yet with Interstitial Cystitis?
Do you suspect you have interstitial cystitis but haven't been diagnosed yet? Post here!
Topics: 2,588 Posts: 19,073
2,588 19,073
Topics: 4,126 Posts: 31,681
4,126 31,681
Treatment Options
Medical Marijuana and CBD
Share your experience using medical marijuana and/or CBD oil to relieve your symptoms.
Topics: 14 Posts: 160
Last Post: Travelling with CBD
14 160
Oral Medications
Oral medications are usually the first treatment options suggested for patients with mild to moderate bladder symptoms and/or pain.
Topics: 6,354 Posts: 40,635
6,354 40,635
Bladder Instillation Therapy
Bladder instillations are often performed for mild, moderate and, in some cases, severe IC.
Topics: 2,200 Posts: 16,032
2,200 16,032
Topics: 1,309 Posts: 9,403
1,309 9,403
Topics: 1,868 Posts: 14,871
1,868 14,871
Ellesha Park
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: 1,089 Posts: 13,387
Last Post: Help me!
1,089 13,387
Bladder Removal (623/8,623)
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: 3,455 Posts: 28,333
3,455 28,333
Alternative Therapies (1,443/10,591)
Cyclosporine (60/919)
Botox (298/2,570)
Other Treatments (956/6,415)
The IC Diet
General Diet Questions
Ask questions about diet and interstitial cystitis IC/PBS here!
Topics: 6,626 Posts: 46,096
Last Post: Zinc
6,626 46,096
IC Diet: Recipes
Share your favorite IC friendly recipes and menu ideas here!
Topics: 1,318 Posts: 3,208
1,318 3,208
by Mc2203
Main Dishes (151/496)
Casseroles (12/51)
Salads and Soups (80/212)
Desserts (152/394)
Hot Drinks (83/407)
Cold Drinks (81/286)
Cookies & Candy (50/190)
Cocktails (3/27)
Topics: 62 Posts: 193
Last Post: Veggie Smoothies
62 193
by Cal-m
Breakfast (7/32)
Dinner (4/13)
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: 292 Posts: 1,937
292 1,937
Topics: 187 Posts: 1,125
187 1,125
Depression & Anxiety
Discuss your thoughts and concerns about depression and anxiety here.
Topics: 1,229 Posts: 12,404
1,229 12,404
Topics: 588 Posts: 4,564
588 4,564
Topics: 478 Posts: 3,592
Last Post: Swimming
478 3,592
Managing Interstitial Cystitis Flares
Pain Management For Interstitial Cystitis
Discuss pain management strategies here!
Topics: 2,760 Posts: 23,722
2,760 23,722
Help! I'm in an interstitial cystitis flare!
Are you in a flare? Need support? Post here!
Topics: 3,793 Posts: 28,745
3,793 28,745
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: 648 Posts: 5,747
648 5,747
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: 4,420 Posts: 30,971
4,420 30,971
Fibromyalgia (92/604)
Vulvodynia (942/6,885)
Dry Eyes/Dry Mouth (141/906)
Fungal Infections (339/2,762)
Other Related Conditions (1,884/13,821)
Pregnancy and Parenting With Interstitial Cystitis
Topics: 1,214 Posts: 6,836
Last Post: Labour or c section
1,214 6,836
I'm Pregnant! (692/6,378)
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: 141
34 141
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: 222 Posts: 1,667
222 1,667
Dating with IC (48/361)
Topics: 1,407 Posts: 12,693
1,407 12,693
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: 3,884
Last Post: Accutane
401 3,884

What's Going On


There are currently 2116 users online. 9 members and 2107 guests.

Most users ever online was 157,401 at 05:30 AM on 12-24-2020.

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


Topics: 82,878   Posts: 626,086   Members: 51,567   Active Members: 85
Welcome to our newest member, Fra93.

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  • Milla25
    by Milla25
    Hi everyone. I’m glad I found this place, because I don’t know where else to turn.

    A while back I got a UTI (my first problem having any kind of infection/problem with my urinary system). My symptoms were constantly feeling like my bladder wasn’t empty even after peeing and frequently...
    02-03-2021, 08:38 AM
  • fany
    Elmiron and maculopathy
    by fany
    I'm in France and it's very difficult to get information about the dangers of Elmiron.
    I would like to know if having it in instillations is less dangerous for the eyes than in the usual way (tablets).
    Thanks for your help.
    01-20-2021, 04:53 AM
  • darvana
    DNA program and antibiotic flares
    by darvana
    Hello friends,
    I have been working with my doctor and Microgen to do the DNA therapy and break up biofilms to target trapped bacteria in the bladder wall behind the biofilm. I am on round 7. Along the way much has been revealed as we go layer by layer. It is hard sometimes when it looks like we...
    10-09-2020, 12:08 PM
  • rantn.n.ravn
    Does anyone else take Glucosamine Chondroitin for joint issues?
    by rantn.n.ravn
    I have already checked with my doctor and pharmacist and I was told I do not have any sort of conflict with my medications to add this to my list of medications however when I went to get it i found that it now has MSM and Tumeric in it. I was able to find just Glucosamine and just Chondroitin and...
    04-28-2020, 05:24 PM
  • rantn.n.ravn
    Are cystoscopies repeated?
    by rantn.n.ravn
    I had a cysto under sedation and I believe it included hydro, and two biopsies of very interesting looking lesions 11/4 and despite the meds I still think I am worse. I don't think the biopsies are healing well. Is there ever going to be a need for me to ever have this again?
    12-09-2015, 05:48 PM

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