What is Interstitial cystitis IC
Interstitial Cystitis (commonly abbreviated to "IC") is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as ...
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I wish I could share with you my IC experience of yesterday - and visit with my urologist. It was enlightening and so good to share with others who also walk the IC walk.
However, I no longer feel this is a safe place to disclose personal information. I've been watching as several have left this site - and I have made efforts to contact the "owners". There have been no responses....and I'm surprsied. Other groups who part of Daily Strength have Active Moderators -- who participate and guide conversations to steer them from becoming toxic. Several persons here have commented on the domination of a couple people -- continually pressing their particular views and stopping conversations with their negativity. There seems to be an attempt to prey on younger persons....to draw them into personal conversations outside this group....that sends up lots of red flag warnings....but no moderator to step in and oversee - or even verify the participants are actually who they say they are. There needs to be an active participant moderator who has time to oversee - and access to the website "owners" who can actually do something about abuse problems. If there is someone out there doing this, please let us know......this place now feels so very vulnerable - and I'd really like to continue to participate - IC is a real and current issue in my life .... but I'm waiting for someone to help us out here! We are vulnerable. Hoping....really hoping. And thanks to all who have recently written here about this problem -- if I felt it was only me, I would not have imposed my thoughts on anyone. But...seeing that this involves a group of really sensitive and thoughtful participants who now feel dominated and silenced.....I hope our moderator notices and helps us out :) Wishing you peace and less pain today. Posted on 11/05/09, 01:11 pm |
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I totally agree we need a moderator. I felt very shut down a few times while sharing here. But I refuse to let someone take my support away from. We are allowed to speak openly and help each other at all times. If you ever need to feel safe I'm available talk to me. I'm here for you. Hugs, Marci 
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Hi Ladies,
Thank you for addressing this issue. I did take the time to Report Abuse to the owner of this website and received positive feedback regarding it. I told the owner that there was a particular person who acts like she knows it all and isn't really providing the support that we need. In fact, she has made more people angry and caused them to leave the site, especially people who I absolutely loved and truly valued their advice. So far, I have not seen this person on this website at all this week and I feel a little bit of peace now. I am staying on this website because I have made a lot of nice friends who truly support me and vice versa. I hope all of you continue to stay on here because we cannot let one person drag us down. I truly agree with your message Sister Kathy and I'm hoping that more people will Report Abuse to particular messages in the future so that we continue to have a great and supportive group here. I am always available to talk also and I appreciate your advice. Thank you again for the message and I hope that we can be there for each other in the future. I guess in a way, I did act as a moderator this past week but I'm hoping that more will help me out so we can keep the negativity out of this support group. Thanks for your help! I hope to talk to you soon. ;) Lots of hugs! Laura
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Hi Ladies,
I don't post much on this site, but wanted to say I agree with you about negative info I have seen. It's why I have stayed away. I found the postings of a particular person,just too negative, and too confusing/upsetting for me, so I avoided the site. I feel that no patient can dictate to others what we need to do or not do to heal or feel better. She doesn't know each user or the details of our cases. Each person's symptoms are different and from a different root cause. I think that trying to find the root cause for your own issues is best, rather than following the advice of a stranger, even if that person's heart is in the right place. Best of luck and health to you all. Katie
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