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Posting guidelines reminder

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  • Posting guidelines reminder

    We get so many new faces every day and coming to a new site can be very confusing. I know when I go to a new message board or new site it takes me quite awhile to find my way around - and sometimes even to find information that is second nature to people who have been there a long time.

    It's easy for us "veterans" to forget that information we access with ease is hard to find for someone new to the site --- and especially for someone new to surfing the web and figuring out how to use message boards.

    We expect our users to conduct themselves as they would in any support group..with courtesy, kindness, and respect for each other. We do not appreciate posts that promote conflict, that include personal attacks, or that are resentful of others postings. We expect our users to debate the message not the moral character of those involved. Ultimately, when someone leaves our boards, we want them to feel encouraged by the experiance, NOT discouraged.


    1) Swearing or Profanity

    2) Personal Attacks

    3) Mentioning any doctor negatively...(lawsuit city here!!!)

    4) Posts that encourage suicide. (Yes, that's happened once or twice!)

    5) Posts that attempt to provide medical advice.

    6) Posts that solicit for products without permisson from Donna or myself.

    7) Posts that insult other users on the basis of race, creed, religion, etc.

    8) Posts that are insensitve to other cultures.

    9) Posts that are insensitive to 9/11.

    10) Posts that attack the ICN or any ICN staff, member, or volunteer. If anyone has a beef about the ICN, those should be e-mailed directly to me.


    1) Posts that are consistantly negative, disturbing, scary or appear to have other serious problems. We may instruct that user to use other boards that can help them with their problem, such as web sites that offer family counseling, suicide support, depresson support, or mental illness support. We may also instruct that user to step away from the ICN for a period of time until they resolve some of those issues.

    2) Posts that are filled with anger. Users who are always "angry" draw away from the support and encouragment we hope to offer. We are not here to serve as the personal anger management tool of our users. If someone is having a bad day, we want them to NOT visit the ICN first! They need to talk with friends, write in their journals, or talk privately by e-mail and calm down before posting on out site.

    3) Posters who have no respect for others. If you post on the ICN in our "public" must expect comment!!! If it is negative, you should NOT come back and blast those who replied. By posting anything on the boards, you invite comments, both pro and con. If you do not want comments, DON"T POST!!!

    Hope this helps. We've run message boards for many years now. We've seen consistantly that some posters fall into the above particular, in respect to personal attacks and anger. We sincerely understand that IC can bring out the worst in all of us at times. But like any support group, we expect the overall tone of posts to be encouraging, uplifting, and hopeful.....because that is how we want to end the day ourselves. If you have any doubt about what you want to post, save it for a day and reread it before posting it on the boards.

    Lastly, we reserve the right to remove anything that we feel crosses the line. That's reality. If you ever have any questions about a posting, you are welcome to contact me personally, and I will be happy to explain the circumstances, and to provide some type of advice, resolution, or guidance. -Jill O.

    Diagnosed August 2001

    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

    I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

  • #2
    Thanks for the reminder!

    IC diagnosed officially via cysto/urodynamics 1/26/07

    Grade II Endometriosis diagnosed via lap 12/11/07

    "Fall down seven times, Stand up eight."

    "Life is a tragedy for those who feel and a comedy for those who think."

    Current Treatments:
    Interstim Since 5/25/07!
    Birth Control


    • #3

      Thank you so much for the reminder. We needed it!

      Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

      "One hour at a time, this was NOT my American Dream but it has to work out somehow."

      I also have some journals of my journeys, past and some present at: and

      Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.


      • #4
        All's good on one who suffers "foot in mouth" disease (finger on enter button??) and my temper tends to flare off with the naughty words, it is a good reminder...(but with my meds, I always forget what I wrote!! I think I've done ok for the most part)

        Face it, we are all looking for that slice of magic pie to make us well and we are frustrated. We are all from differing backgrounds and beliefs, but we share a very vexing and, for some of us, life changing situation. I think that makes us sisters in a sense (and I nod to those men who suffer with this too, it sucks) and I think sometimes we who are on the board often forget the common courtesy and in pain and just anger at the world, lash out. But I have always felt lifted by your help and knowing there were women who have also found themselves like me....well, it keeps me from thinking I'm crazy.

        Thank you all : )

        I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

        Medications I CURRENTLY take:
        90 mgs Ms contin (45 mgs Am/PM)
        Percocet as needed
        Topomax 100mg day
        Ambien 10 mg bed
        desipramine 25 mgs

        If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
        Albert Einstein