ICN Support Center
Jill Osborne MA – ICN Founder
Welcome to the HEART & SOUL of the IC Network, our on-line support activities. For more than twenty years, the ICN has run a vibrant and very large on-line support community, founded well before the days of Facebook. We have worked with, literally, millions of patients over the years and we take great pride in providing a safe and educational environment for you to talk about your IC symptoms.
My goal has always been to create a place where you will feel encouraged and supported. In our forum, you can ask questions, make friends and, perhaps most importantly, help others who might be struggling. Please read the Support Forum Guidelines policies. We do have rules and we are a private, calm and encouraging port in the storm of IC.
Live IC Support Group Meetings
The ICN offers live IC/BPS/PFD support group meetings held twice a month and simulcast through our Facebook and YouTube pages. Led by Jill Osborne, the longest serving IC support group leader in the USA, she will take your questions about IC, share new information, review IC subtypes, explore treatment options, self-help tips and much more! Each meeting lasts about two hours!
When:
Sundays Of the Month starting between 12:30PM and 1PM. Please note that it may take a few extra minutes to get the video feeds working so please be patient!
Jill also does meetings during the middle of the week on random days and times to accommodate patient schedules, as well as our international viewers. To be notified of those, just Like our FB or follow our YouTube channel and you will be notified when they start.
Where:
It is simulcast through our Facebook Page and our YouTube Channel. ZOOM meetings may also be started during the meeting for meetings.
ICN Face Page – https://www.facebook.com/interstitialcystitisnetwork?fref=ts
ICN YouTube Channel – https://www.youtube.com/icnjill/
ZOOM – https://us02web.zoom.us/j/89064189778?pwd=UkZGMzQxN2JxS0pjQnhaN0ZBMU1Zdz09
How To Submit Questions
The best way to get your question answered is to send it to us in advance! Just send it to: icnetwork@mac.com. Or you can ask your question in the meeting but please know that they often cycle through very very quickly. We try to answer them all! Don’t hesitate to ask your question twice if we miss it the the first time!
Our Original Interstitial Cystitis Forum
More than 50,000 other patients participated in the oldest and most reliable support forum on the web. Times have changed and so must we. Forums are now considered “old and outdated” and have mostly been shut down across the internet as patients have moved to social media and video apps. The ICN Support Forum is now shut down for interactive use. I have been able to save all of the postings and data for research purposes. I fully intend to write at least one book, sharing the thousands of stories that patients have shared. You can find this at: http://www.icnlegacyforum.org.
Again, you can’t register or post, but you can certainly search through messages easily. Got a question about various treatments? You can find thousands of personal patient reports easily. Looking for success stories?? You’ll find many!
CLICK HERE TO ENTER THE LEGACY FORUM!
Support Group FAQ
Do you find support groups or forums overwhelming?
If you do, you are certainly not alone. All support groups, whether they be in-person or online, attract patients who are struggling. That’s what we are here for. But, for every patient having a bad day, there are thousands having great days. You always have to keep that in perspective.
Don’t rely on any support forum or Facebook for your IC education.
Always read the real educational content on our website first. We’ve spent years putting it together and it will give you a great start towards understanding why you’re symptoms may have become and what you can do to work through them and find relief.
If you’re feeling vulnerable, take a break from the boards.
What could be better than sitting in the sunshine or walking on the beach to clear your mind and rejuvenate your spirit. Physical activity is vital to our health and, unfortunately, spending hours on our computers just isn’t enough to keep us healthy and at peace. So take a day, a week or longer to refresh and nourish your spirit. Get away from the computer. Take a walk. Read a great book. Talk with your friends. We all have to nourish our spirit several times a year! When you’re ready, come on back and maybe you’ll be able to help a few other IC patients too.
Please remember that IC is very individualized.
Don’t assume that what happens to one patient will happen to you. If you’ve read any of our IC educational information, you’ll see that there is tremendous variety and diversity in the IC patient population. Some of you have bladder wall injuries, others have pelvic floor dysfunction, still others Hunner’s lesions. Based on this alone, you cannot assume that your case is identical to any other patients. Remember, too, that the vast majority of patients improve over time.[/fusion_content_box][/fusion_content_boxes]
Find A Support Group
Looking for an interstitial cystitis or chronic pelvic pain support group? We offer lists of all available support groups in the USA, Canada and around the world. I you have a group to list, please send us an email at: supportgrouplisting@ic-network.com
- IC/BPS – USA Group Listings
- IC/BPS – Canada Group Listings
- IC/BPS – International Patient Organizations
- National Association for Continence Bladder & Bowel Health Forum
- Pelvic Pain Network
- Endometriosis Groups
- Irritable Bowel Syndrome Groups
- Help For IBS – Heather Van Vorous Educational Website
- Hystersisters – For women who are considering or who have had hysterectomy
- Prostatitis Outreach
Learn How To Start A Support Group
One of the greatest gifts that you can give to this movement is to start a support group. Support groups always begin with a motivated patient and/or family member who wants to make a difference. They developed their medical condition at various ages. They struggled with medical care. They agonized over friendships lost and family relationships strained. Most of all, they were determined not to give up. Instead of suffering in silence at home alone, these patients poured their energy into making a difference. You can to! As Margaret Mead once said “Never doubt that a small group of thoughtfully committed citizens can change the world;indeed, it’s the only thing that ever has.”
Support groups (and their leaders) are ambassadors for patients in their local communities. They work with and/or educate patients, work with local clinicians, support local researchers, coordinate IC Awareness Month activities and, perhaps, with the media, government entities and so forth. It’s immensely gratifying but shouldn’t be taken lightly.