Whether you are newly diagnosed with IC or a grizzled veteran, you do NOT have to take this journey alone. It’s important that you connect with others. Why? People who are socially connected have less anxiety, less depression and higher self-esteem. You have thousands of IC brothers and sisters who share your struggles and are willing to offer a shoulder and/or words of encouragement to you. You can find support in local IC/pelvic pain support groups, through social networking and live meetings that you can participate from the comfort of your home.
Live / Streamed Support Group Meetings
The ICN offers live IC/BPS/PFD support group meetings held twice a month on the 1st and 3rd Sunday of every month, 12:30PM PST, 3:30PM EST. Led by national IC support group leader in the USA Jill Osborne, she will take your questions about IC, share new information, review IC subtypes, explore treatment options, self-help tips and more. Each meeting lasts between 2 to 4 hours. Their purpose is to educate and inform patients so that they can work more effectively with their medical care providers. 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.
- ICN Face Page – https://www.facebook.com/interstitialcystitisnetwork?fref=ts
- ICN YouTube Channel – https://www.youtube.com/icnjill/
- Streaming coming soon!
Before social networking began, websites offered their own support forums which still operate today. Many patients prefer to get support in private forums where friends and/or family members can’t see their postings as they would on Facebook.
- Interstitial Cystitis Network Support Forum – Has paid staff managing the forum, welcoming new participants, answering questions, etc.
- Interstitial Cystitis Association Support Forum
- International IC Organizations – There are many organizations that serve patients throughout the world.
Some Facebook groups are “open” while others are “closed.” (You will need to request to join some groups.) Please note that Facebook groups and group leaders have their own unique approach and/or perspective about IC. We suggest that you visit several until you find one that you are comfortable with. We encourage you to protect your privacy. Do NOT release your personal information, phone number, address. Do NOT give anyone money. The best support groups on FB are those that are monitored on a daily basis, have rules of conduct and who prevent personal attacks and hostile postings.
Do you have a group not listed?? Please submit your group information here!
- Interstitial Cystitis Network
- Interstitial Cystitis Association
- Confident Choices
- IC Awareness Month
- Interstitial Cystitis Warriors
- IC/Painful Bladder Syndrome (UK)
- IC/Today (Interstitial Cystitis Today)
- Vulvodynia and IC Support Group (UK)
- Interstitial Cystitis Diet
- IC Foodies
- Bladder Heath UK
- Icstrong: Interstitial Cystitis Awareness Movement
- Interstitial Cystitis: Living with IC Support Group
- United for Interstitial Cystitis
- Finding Pelvic Sanity
- Interstitial Cystitis 411
- IC Support Group
- Lexie Fei (Vancouver Uti Girl)
- Chronic Pelvic Pain – The Mind Body Connection
Local Support Groups
There is nothing better than meeting IC patients in person, usually in a support Group. You can find a list of support groups here:
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. Learn more here!