This org is supposed to be an advocacate for interstitial cystitis suffers. Yet time & time again Jill repeatedly tweets in support of the Democratic Party.
Review by Ntritan2 years ago
Jill, the founder, is knowledgeable, empathetic, down to earth and all around helpful. There is no pressure to buy products, the ICN just sincerely wants to help as much as they can with IC issues for their clientele. They are up on the research and they take time to understand your specific needs. I have had IC for 8 years and the ICN has by far been the organization that has helped me the most. I just renewed my membership and am looking forward to using the ICN forum and getting the IC Optimist magazine again.
Review by Daji5 years ago
I am not sure who those people are who are giving this site one star, but there seems to be a conspiracy to crucify Jill and Donna and the ICN. Seriously, the reviews don't make sense. This website was one of the first to address the confusing needs of an interstitial cystitis patient. When I was first diagnosed, the people who worked the message boards saved my life..I went for years feeling like I was alone with this blasted condition. I also don't understand the bad treatment quotes. Although I don't visit as often as I used to (because I am feeling better...in part because of the self-help information and encouragement I got from ICN). But I just looked at the site again recently. They appear to have well balanced information, both good and bad. For example, the Interstim, which I considered several years ago, has a couple of different places where people can write good things and bad things. I say bravo to Jill Osborne who has dedicated her life to this miserable disease.
Review by Ieysha Nurss5 years ago
The IC-Network has been by far the most helpful information site on interstitial cystitis that I have found on the internet. In the 11 years I have been regularly using this site, I have never seen Jill or Donna give out medical advice, merely questions or topics for patients to discuss with their own personal doctors. The diet information was ahead of the other major IC website by years! No purchase is required by any patient to access the information on the website or to participate in the message boards, but if a patient chooses to order from the IC Network store, the product is reasonably priced & arrives very promptly (unlike my experience with the other organization which took 3 months to mail me an information packet on starting a support group). And the IC-Network does not engage in continuous mass mailings requesting donations like the other organization does. I highly recommend the IC-Network website to any new or veteran patient seeking information to make informed decisions with their own local personal medical team.
Review by Aarkan5 years ago
This is the MOST helpful and friendly website on the topic of interstitial cystitis on the web. There are other good places but this is MY "go-to" for information, for help, for support, and they even have a printed quarterly magazine that is so good I bought ALL the back issues going back years. That is how they finance the website and they have a small online store of good stuff that is difficult to find or even know about.
They have countless articles on countless topics. They have a food list that helps you to know what foods you might be able to eat to avoid pain and other symptoms. All of that is free of charge. You only pay if you buy something or you want the printed magazine.
In other words this is a HUGE, helpful website that covers ALL aspects of interstitial cystitis at NO cost to you.
The owner is THE most knowledgeable person on the disease of IC that I have ever heard of and that is saying a lot due to the fact that I own (and have read) about 6 huge books on IC. She is a great spokesperson on behalf of those with IC as well. She has spent a lot time researching, writing and then appearing on panels in order to bring more attention to this disease.
The website is great but there is more. There is a VERY helpful forum attached to it. You are allowed to join it and write posts and, of course, read posts. You can read all the posts going back for years. It has a search feature so you can zoom in on what you need to know about right now. No forum is perfect but it is the ONLY support that I have because I don't know anyone in real life that has IC.
I really can't say enough about this website. It's the real thing. It's a lifeline to me. It contains so much information in one place AND they stay current. They provide the AUA guidelines and when those change they provide the new guidelines as just one example. If the only thing they had was the free (printable) food list it would be worth coming on here and yelling from the mountain tops how great it is but it is so much more than a food list. Pudendal nerve entrapment is fully addressed as is overactive bladder, family relationships regarding IC. It's a place for both men and women. It's a place to share your best recipes too because it's so difficult to find food that our bodies can tolerate.
If you have IC go there, join the forum and be helped. 40,000 other people already have. Don't live with IC and not use this website to help yourself. Self-care is so important and being current on the latest cures, ideas, medications, etc., is vital. You have to be your own best advocate when you have IC. No one else is going to do it for you. There are good doctors out there but they are outnumbered by doctors that did not study IC in medical school. Even some urologists did not have one single class on IC during their entire education.
I could say more but I'll let you visit there and find out for yourself how useful and friendly this website is.
Review by MIRxMom5 years ago
The IC Network has been so incredibly helpful to me. Not only do they have answers to so many questions a patient might have about IC, but they also have educational videos and fact sheets. Most importantly, everyone at the IC Network is also a fellow ICer. It just doesn't get more real and personal than that. I'd like to personally thank everyone involved with the IC Network for all that you've done for me and so many ICers everywhere. Also remember to check out icawareness.org, the IC Networks website for the September Campaign every year. Lots of ways for us all to get involved with spreading IC Awareness!
Review by Geneisha6 years ago
A wonderful site which I could not be without. 5 stars. The forum is a life saver. The team who run it - Jill and Donna - are hard working, dedicated, friendly people. A big thank you to them for all they do!
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The Interstitial Cystitis Network is a social networking pioneer. Founded in 1994 as one of the first health websites, as well as the original web site dedicated to IC, its original mission was to deliver compassionate support to patients who were home...