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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: 1,843 Posts: 9,039
Last Post: New book
1,843 9,039
ICNDonna
Sub-Forums:
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: 9 Posts: 99
9 99
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
ICNDonna
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: 6,767 Posts: 46,500
6,767 46,500
Snowcat
by Snowcat
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: 51 Posts: 284
Last Post: It’s back
51 284
Helen91
by Helen91
Newly Diagnosed With Interstitial Cystitis
Introduce Yourself and share your interstitial cystitis story here!
Topics: 7,182 Posts: 56,660
7,182 56,660
ICNDonna
IC Success Stories
Share your Interstitial Cystitis Success Story Here
Topics: 1,202 Posts: 12,846
1,202 12,846
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: 38 Posts: 199
38 199
Men with Interstitial Cystitis
Are you a newly diagnosed man? Meet others here!
Topics: 481 Posts: 3,534
481 3,534
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: 5,030
418 5,030
Diagnostic Methods For Interstitial Cystitis
General Diagnostic Questions
Ask questions about the diagnosis of IC, PFD and pelvic pain here!
Topics: 3,163 Posts: 19,098
3,163 19,098
ICNDonna
Sub-Forums:
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: 19,122
2,588 19,122
Topics: 4,127 Posts: 31,683
4,127 31,683
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
MoralPhoebe
Oral Medications
Oral medications are usually the first treatment options suggested for patients with mild to moderate bladder symptoms and/or pain.
Topics: 6,356 Posts: 40,641
Last Post: Intrferon
6,356 40,641
emeraldjules
Sub-Forums:
Bladder Instillation Therapy
Bladder instillations are often performed for mild, moderate and, in some cases, severe IC.
Topics: 2,203 Posts: 16,032
2,203 16,032
traveller
Sub-Forums:
Topics: 1,311 Posts: 9,409
1,311 9,409
Topics: 1,869 Posts: 14,871
1,869 14,871
Sub-Forums:
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: 13,390
1,089 13,390
ICNDonna
Sub-Forums:
Bladder Removal (623/8,626)
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: 3,456 Posts: 28,336
3,456 28,336
jvr
by jvr
Sub-Forums:
Alternative Therapies (1,443/10,591)
Cyclosporine (60/919)
Botox (298/2,570)
Other Treatments (957/6,418)
The IC Diet
General Diet Questions
Ask questions about diet and interstitial cystitis IC/PBS here!
Topics: 6,627 Posts: 46,108
6,627 46,108
Sub-Forums:
IC Diet: Recipes
Share your favorite IC friendly recipes and menu ideas here!
Topics: 1,318 Posts: 3,209
1,318 3,209
echloe
by echloe
Sub-Forums:
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: 195
Last Post: Start with Chicken
62 195
Bladderella
Sub-Forums:
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: 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: 589 Posts: 4,566
589 4,566
Topics: 480 Posts: 3,598
480 3,598
Managing Interstitial Cystitis Flares
Pain Management For Interstitial Cystitis
Discuss pain management strategies here!
Topics: 2,761 Posts: 23,727
Last Post: CBD really work?
2,761 23,727
ICNDonna
Help! I'm in an interstitial cystitis flare!
Are you in a flare? Need support? Post here!
Topics: 3,794 Posts: 28,748
Last Post: Luvena
3,794 28,748
Chris Schultz
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: 4,425 Posts: 30,983
4,425 30,983
Sub-Forums:
Fibromyalgia (92/604)
Vulvodynia (942/6,885)
Dry Eyes/Dry Mouth (141/906)
Fungal Infections (339/2,762)
Other Related Conditions (1,887/13,833)
Pregnancy and Parenting With Interstitial Cystitis
Topics: 1,214 Posts: 6,836
Last Post: Labour or c section
1,214 6,836
ICNDonna
Sub-Forums:
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
Pillowfight
Sub-Forums:
Topics: 272 Posts: 1,629
272 1,629
Sub-Forums:
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
Sub-Forums:
Dating with IC (48/361)
Topics: 1,407 Posts: 12,693
1,407 12,693
Sub-Forums:
GREAT DEBATES
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: 3,885
Last Post: Tms
402 3,885
Bevity
Tms
by Bevity

What's Going On

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There are currently 2467 users online. 13 members and 2454 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

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Topics: 82,938   Posts: 626,375   Members: 51,712   Active Members: 83
Welcome to our newest member, HeidiVet.

Our New Book

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  • sonya777
    Covid-19 vaccine and IC
    by sonya777
    Hello everyone,

    I am researching the topic of flares after vaccination. Could you please share your experience? I am about to get vaccinated and I have a lot of questions since on another forum a lot of people are writing they have really bad flares after vaccines, yet some of them cannot...
    Yesterday, 06:20 AM
  • jvr
    Small Fiber Polyneuropathy
    by jvr
    Hello,
    Has anyone been diagnosed and treated for Small fiber polyneuropathy? This seems to be where the research on IC may be headed according to Jill's last IC Optimist article and also according to the doctor my daughter sees for IC. I've been looking at lot at Dr. Anne Oaklander at Mass General...
    Yesterday, 05:28 AM
  • jvr
    For those that have IC run in their families...
    by jvr
    Hi All,
    It's been awhile since I've been on here, but I've been thinking about the genetics of this for those of us that have other family members with IC. I was curious to hear from others at what age did your IC symptoms appear and if you have any other conditions or family members with other...
    05-08-2021, 01:49 PM
  • jvr
    LDN (low dose Naltrexone)
    by jvr
    Hello,
    Has anyone here tried LDN (low dose Naltrexone)? I noticed Dr. Hanno at Stanford and others are doing a clinical trial to see how it works on IC. I was curious to hear of any one's experience.
    Thanks!
    06-04-2021, 04:50 AM
  • Jppow17
    It’s back
    by Jppow17
    I was diagnosed with IC in 2015. I was diagnosed with Pelvic Congestion Syndrome in 2020. My IC symptoms disappeared when I had PCS. I had vein embolization done 3 months ago and although the PCS is better my IC has come back full force. I’m in so much pain. I’ve never been on pain meds but I think...
    04-18-2021, 07:27 AM

Latest Topics

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  • sonya777
    Covid-19 vaccine and IC
    by sonya777
    Hello everyone,

    I am researching the topic of flares after vaccination. Could you please share your experience? I am about to get vaccinated and I have a lot of questions since on another forum a lot of people are writing they have really bad flares after vaccines, yet some of them cannot...
    Yesterday, 06:20 AM
  • jvr
    Small Fiber Polyneuropathy
    by jvr
    Hello,
    Has anyone been diagnosed and treated for Small fiber polyneuropathy? This seems to be where the research on IC may be headed according to Jill's last IC Optimist article and also according to the doctor my daughter sees for IC. I've been looking at lot at Dr. Anne Oaklander at Mass General...
    Yesterday, 05:28 AM
  • Katrina E
    Would love some support with this
    by Katrina E
    Hi
    I have not been overly active on this board as my IC is doing reasonably well, watching diet, stress and supplements are helping, still hanging on to the last Elmirion. Today I went to women's hospital and it appears my endo has spread to my uterus-anyways long story short, I have had a tough...
    06-14-2021, 04:58 PM
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