Hi,
Like many of you on here I am getting off Elmirion, I have one to go and am recently going through a med change for my mental health. I am taking some time off work to sort myself out and hopefully get some additional help with my bladder. I am also trying to slowly wean off Noretriptyline...
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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: 102
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: 28
Posts: 280
Last Post:
Can a flare-up cause chest problems
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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: 6,775
Posts: 46,556
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6,775 | 46,556 |
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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: 52
Posts: 287
Last Post:
Help! Terrible pain after Physical Therapy
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Newly Diagnosed With Interstitial Cystitis
Introduce Yourself and share your interstitial cystitis story here!
Topics: 7,183
Posts: 56,661
Last Post:
Cystoprotek
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IC Success Stories
Share your Interstitial Cystitis Success Story Here
Topics: 1,202
Posts: 12,852
Last Post:
Paquenil for IC
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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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Men with Interstitial Cystitis
Are you a newly diagnosed man? Meet others here!
Topics: 482
Posts: 3,537
Last Post:
Possible ic pls help
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482 | 3,537 |
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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: 3,167
Posts: 19,099
Last Post:
Suggestions for a Urologist in the UK
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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: 4,132
Posts: 31,704
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4,132 | 31,704 |
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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: 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: 6,362
Posts: 40,656
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Bladder Instillation Therapy
Bladder instillations are often performed for mild, moderate and, in some cases, severe IC.
Topics: 2,204
Posts: 16,035
Last Post:
Bladder Instillations and what to expect?
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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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1,869 | 14,871 |
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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: 13,393
Last Post:
Nothing is helping!!!!!!!!!!
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1,089 | 13,393 |
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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: 3,457
Posts: 28,339
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: 46,113
Last Post:
lemon water
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IC Diet: Recipes
Share your favorite IC friendly recipes and menu ideas here!
Topics: 1,320
Posts: 3,209
Last Post:
Big bite juicer screen clogging
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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: 1,231
Posts: 12,409
Last Post:
Anxiety and flare--ups ruin travel plans
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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: 23,728
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: 3,796
Posts: 28,751
Last Post:
IC on the tongue?
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3,796 | 28,751 |
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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: 4,426
Posts: 30,985
Last Post:
Eosinophile esophagitis
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| Pregnancy and Parenting With Interstitial Cystitis | ||||||||||||||||||
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Topics: 1,215
Posts: 6,836
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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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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: 223
Posts: 1,669
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223 | 1,669 |
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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 2884 users online. 7 members and 2877 guests.
Most users ever online was 157,401 at 04:30 AM on 12-24-2020.
-
10-07-2021, 09:39 AM
-
Hi,
Like many of you on here I am getting off Elmirion, I have one to go and am recently going through a med change for my mental health. I am taking some time off work to sort myself out and hopefully get some additional help with my bladder. I am also trying to slowly wean off Noretriptyline...10-07-2021, 09:39 AM -
Hi all, I believe I have IC although I haven’t yet been formally diagnosed. The symptoms have been getting worse but tonight the pain for the first time is very severe, almost unbearable. Feels like spasms being hit by lightning type pain that takes your breath away.
I have Gabapentin...10-01-2021, 11:37 AM -
Can anyone give me any tips or ideas how to plan a vacation in another country?
I want to go see my girlfriend, but I am always afraid I'll
flareup in another country. Because they might sell
food that is different than the United States. It also
doesn't help that I have...09-29-2021, 08:00 PM
