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...
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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: 1,843
Posts: 9,039
Last Post:
New book
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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: 9
Posts: 99
Last Post:
DNA program and antibiotic flares
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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: 27
Posts: 275
Last Post:
Elmiron and maculopathy
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27 | 275 |
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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: 6,767
Posts: 46,500
Last Post:
iArulil instillations
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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: 51
Posts: 284
Last Post:
It’s back
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Newly Diagnosed With Interstitial Cystitis
Introduce Yourself and share your interstitial cystitis story here!
Topics: 7,182
Posts: 56,660
Last Post:
Frustration with elimination
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IC Success Stories
Share your Interstitial Cystitis Success Story Here
Topics: 1,202
Posts: 12,846
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1,202 | 12,846 |
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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: 38
Posts: 199
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38 | 199 |
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Men with Interstitial Cystitis
Are you a newly diagnosed man? Meet others here!
Topics: 481
Posts: 3,534
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481 | 3,534 |
by ICNDonna
04-11-2021, 12:20 PM
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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: 418
Posts: 5,030
Last Post:
Hiprex sucesssful results - pain gone!
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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: 3,163
Posts: 19,098
Last Post:
Slight bladder leakage ???
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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: 2,588
Posts: 19,122
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2,588 | 19,122 |
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Topics: 4,127
Posts: 31,683
Last Post:
New and aggravating urethral pain
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4,127 | 31,683 |
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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: 160
Last Post:
Travelling with CBD
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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: 6,356
Posts: 40,641
Last Post:
Intrferon
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Bladder Instillation Therapy
Bladder instillations are often performed for mild, moderate and, in some cases, severe IC.
Topics: 2,203
Posts: 16,032
Last Post:
Uracyst no longer available?
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Topics: 1,311
Posts: 9,409
Last Post:
great video I found about PFD and PT
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Topics: 1,869
Posts: 14,871
Last Post:
Removal of old Interstim leads
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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: 1,089
Posts: 13,390
Last Post:
Facing bladder removal
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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: 3,456
Posts: 28,336
Last Post:
LDN (low dose Naltrexone)
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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: 6,627
Posts: 46,108
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IC Diet: Recipes
Share your favorite IC friendly recipes and menu ideas here!
Topics: 1,318
Posts: 3,209
Last Post:
Banana Blueberry muffins
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Topics: 62
Posts: 195
Last Post:
Start with Chicken
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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: 292
Posts: 1,937
Last Post:
second part of the month flare: help!!!!
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292 | 1,937 |
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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: 12,404
Last Post:
Lexapro and other SSRI Effects?
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Topics: 589
Posts: 4,566
Last Post:
Reaction to birth control hormones
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589 | 4,566 |
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Topics: 480
Posts: 3,598
Last Post:
Creatine and weight lifting
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480 | 3,598 |
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| Managing Interstitial Cystitis Flares | ||||||||||||||||||
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Pain Management For Interstitial Cystitis
Discuss pain management strategies here!
Topics: 2,761
Posts: 23,727
Last Post:
CBD really work?
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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
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3,794 | 28,748 |
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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: 648
Posts: 5,747
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648 | 5,747 |
by BillB
02-03-2021, 04:14 PM
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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: 4,425
Posts: 30,983
Last Post:
Covid-19 vaccine and IC
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| Pregnancy and Parenting With Interstitial Cystitis | ||||||||||||||||||
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Topics: 1,214
Posts: 6,836
Last Post:
Labour or c section
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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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Topics: 272
Posts: 1,629
Last Post:
This post is for you Donna :-)
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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: 1,407
Posts: 12,693
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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: 402
Posts: 3,885
Last Post:
Tms
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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.
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Yesterday, 06:20 AM
-
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 -
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 -
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 -
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
-
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 -
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 -
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
