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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: 1,840
Posts: 9,039
Last Post:
How are you coping?
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1,840 | 9,039 |
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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: 4
Posts: 57
Last Post:
4 UTIs since end of May 2020
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4 | 57 |
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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: 21
Posts: 230
Last Post:
Any Update on Elmiron/Macular Studies?
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21 | 230 |
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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: 6,735
Posts: 46,378
Last Post:
What is going on??
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6,735 | 46,378 |
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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: 43
Posts: 233
Last Post:
Still Lost - Post Laparoscopy
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43 | 233 |
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Newly Diagnosed With Interstitial Cystitis
Introduce Yourself and share your interstitial cystitis story here!
Topics: 7,178
Posts: 56,648
Last Post:
ICN posting guidelines
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7,178 | 56,648 |
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IC Success Stories
Share your Interstitial Cystitis Success Story Here
Topics: 1,196
Posts: 12,811
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1,196 | 12,811 |
by ICNDonna
09-12-2020, 09:46 AM
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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: 34
Posts: 173
Last Post:
Valium
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Men with Interstitial Cystitis
Are you a newly diagnosed man? Meet others here!
Topics: 478
Posts: 3,510
Last Post:
If you don't see many posts here....
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478 | 3,510 |
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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: 5,029
Last Post:
On the healing path and some poetry
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418 | 5,029 |
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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: 3,157
Posts: 19,091
Last Post:
Can't pinpoint pain or not
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3,157 | 19,091 |
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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: 2,585
Posts: 18,987
Last Post:
Male with possible IC pls help!
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2,585 | 18,987 |
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Topics: 4,117
Posts: 31,649
Last Post:
Horrible dropping feeling
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4,117 | 31,649 |
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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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14 | 160 |
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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: 6,352
Posts: 40,624
Last Post:
Elmiron Transition Guide
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6,352 | 40,624 |
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Bladder Instillation Therapy
Bladder instillations are often performed for mild, moderate and, in some cases, severe IC.
Topics: 2,199
Posts: 16,032
Last Post:
First Instillation...
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2,199 | 16,032 |
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Topics: 1,308
Posts: 9,399
Last Post:
PT and Sacroiliac Joint
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1,308 | 9,399 |
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Topics: 1,868
Posts: 14,870
Last Post:
Have had success— Have question
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1,868 | 14,870 |
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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: 1,087
Posts: 13,375
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1,087 | 13,375 |
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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: 3,453
Posts: 28,328
Last Post:
Diclofenac sodium
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3,453 | 28,328 |
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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: 6,621
Posts: 46,068
Last Post:
fried?
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IC Diet: Recipes
Share your favorite IC friendly recipes and menu ideas here!
Topics: 1,315
Posts: 3,204
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1,315 | 3,204 |
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Topics: 62
Posts: 193
Last Post:
Veggie Smoothies
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62 | 193 |
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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: 1,935
Last Post:
second part of the month flare: help!!!!
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292 | 1,935 |
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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: 12,403
Last Post:
Lexapro and other SSRI Effects?
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1,229 | 12,403 |
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Topics: 586
Posts: 4,558
Last Post:
Estriol or Estradiol? I’m confused.
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586 | 4,558 |
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Topics: 478
Posts: 3,592
Last Post:
Swimming
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| Managing Interstitial Cystitis Flares | ||||||||||||||||||
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Pain Management For Interstitial Cystitis
Discuss pain management strategies here!
Topics: 2,759
Posts: 23,717
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2,759 | 23,717 |
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Help! I'm in an interstitial cystitis flare!
Are you in a flare? Need support? Post here!
Topics: 3,791
Posts: 28,731
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3,791 | 28,731 |
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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: 647
Posts: 5,725
Last Post:
distension and biopsy? necessary?
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647 | 5,725 |
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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: 4,416
Posts: 30,957
Last Post:
How to hold a job with ibs
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4,416 | 30,957 |
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| Pregnancy and Parenting With Interstitial Cystitis | ||||||||||||||||||
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Topics: 1,213
Posts: 6,834
Last Post:
Can IC cause miscarriage?
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1,213 | 6,834 |
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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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272 | 1,629 |
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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: 1,406
Posts: 12,691
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1,406 | 12,691 |
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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: 401
Posts: 3,880
Last Post:
Atypical Cause of IC Symptoms?
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401 | 3,880 |
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There are currently 2522 users online. 5 members and 2517 guests.
Most users ever online was 32,261 at 06:00 AM on 08-31-2011.
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hello, I am an Algerian women of 52 years. for now 4 months , i have terrible pain in the bladder. Some days are almost ok, but other are just horrible. I went to an urologist (actually many!) and they all wanted to do a cystoscopy. I was very afraid but finally agreed. so I had a cystoscopy. but...Today, 06:40 AM
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hello, I am feeling so bad. I am again experiencing the horrible pain with the beginning of the second half of my hormonal cycle. unlike the majority of you, it is not limited to ovulation and before period. it is for 15 days ;( . do you have some ideas to make this less painfull, please? I am in p...Today, 01:27 AM
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Hi guys,
My first post here! Here's an overview of my journey over the last 9 years, would love to know if anyone has any similar stories/can give me any idea on what is wrong with my body!
I am a 27 year old female 9 years ago I started to get reoccurring urine infections...Yesterday, 06:58 AM -
Hi my IC was under control with my 1x week heparin instills and some OTC supplements that included HA, chondroitin sulfate, and collagen and Aloe for the past 2 years. At the end of May I was diagnosed with a UTI with ecoli being the culprit and prescribed Macrobid, and then again the same thing in...09-18-2020, 06:43 AM
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Has there been any update on studies showing the link between Elmiron and Macular Degeneration? My eyes are okay (for now) and I have been taking Elmiron for 20 years. I've reduced my dose to 1 pill per day, 5 days a week in an abundance of caution. Thanks....05-09-2019, 02:43 AM
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hello, I am an Algerian women of 52 years. for now 4 months , i have terrible pain in the bladder. Some days are almost ok, but other are just horrible. I went to an urologist (actually many!) and they all wanted to do a cystoscopy. I was very afraid but finally agreed. so I had a cystoscopy. but...Today, 06:40 AM
-
hello, I am feeling so bad. I am again experiencing the horrible pain with the beginning of the second half of my hormonal cycle. unlike the majority of you, it is not limited to ovulation and before period. it is for 15 days ;( . do you have some ideas to make this less painfull, please? I am in p...Today, 01:27 AM
-
Hi guys,
My first post here! Here's an overview of my journey over the last 9 years, would love to know if anyone has any similar stories/can give me any idea on what is wrong with my body!
I am a 27 year old female 9 years ago I started to get reoccurring urine infections...Yesterday, 06:58 AM
