Latest Blog Article: Europeans Release Updated Chronic Pelvic Pain Guidelines
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  1. #1
    ICN Member musiclover's Avatar
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    Celebrities browsing this forum

    When I mention interstitial cystitis to people I know, none of them have ever heard of it or understand how difficult it can make everyday life. I would be very surprised if there were no celebrities out there with IC. If any are browsing these forums, it would be great if they could shed some light about IC to the public. The thing about IC is that it has to do with things people don't like to talk about, such as urinary problems, pain in private places, etc. I think it would help if we could somehow get the word out there to the public. First of all, it may help with funding to IC research, and second of all, it would make the public more aware, which would make it easier on all of us. I want to encourage anybody in the public eye to help inform the public about IC!

    :woohoo::woohoo::woohoo::woohoo::woohoo:
    36 Years old, Live in Bay Area, California.

    Update! Feeling much better these days and can usually live my life! I've had severe IC symptoms since Nov '08, and I've had treatments since June '09. I'm so thankful for the info on this forum to help me get to a place where I can feel okay.

    Pelvic pain began July 2008. Urinary frequency began in November of 2008. IC Doctor says I'm one of the worst frequency patients he has had.

    Main symptoms: Frequency, burning pain. Sometimes I feel I have to go even after I empty my bladder. Completed 8 months of physical therapy.

    Currently on: IC Diet, Elavil (30mg), Elmiron since June '09 (500mg/day).

    Previously tried and quit: one series of six instillations, Neurontin, Ditropan, Oxytrol, electric stimulation to the pelvic floor, Desert Harvest Aloe, Cystoprotek and Flomax, Hydroxyzine (50mg), Alesse Birth control (this helped my period flares when my symptoms used to be bad), PTNS (I think this helped).



  2. #2
    ICN Founder icnmgrjill's Avatar
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    We actually do have both TV and Broadway stars with IC who have used this forum. They prefer to remain anonymous for fear of becoming a butt of jokes on one of the late night shows or gossip sites. I completely understand why and believe that remaining anonymous is the right thing to do. That said, it would be nice if we did have more celebrities. Pamela Sue Martin, of Dallas, finally wrote about her IC struggles just two years ago I think. I had the link on the site. You could try searching the boards for her name.
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

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  3. #3
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    celebrities

    This makes me sad since men have begun to talk openly about prostate and colon cancer. I would be so relieved to see a celeb willing to take some ribbing to possibly help those who can suffer so much.

  4. #4
    ICN Member Rocklandgal's Avatar
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    If just one of these celebrities would really come out, it would make all the difference in the world? I don't want to be mean or gross, but what about Farrah and anal cancer? I know there are other examples out there that are embarassing, but I just can't think of any right this second. I'm not thinking it would be that bad. All of them have their specific causes, and there are hundreds of them! The public would become aware of IC right away.
    Karen

  5. #5
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    famous stars of hollywood

    If famous people in hollywood that have ic would speak out about this horrible decease maybe their would be more funding to try and find a cure.
    Also the general population needs to be aware of the everyday struggles and pain we go through. I read in a research done by a doctor that ic compares to cancer pain. I pray for a miracle cure soon for all who suffer this depilatating dec

  6. #6
    ICN Member penneyjo's Avatar
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    I think we should all write to Dr. Oz and get him to do a segment on it. He's usually very good and quite thorough on the subjects he covers. That show has a large audience and they believe in him. That would be a start.
    treatment:
    -I follow the IC diet to the letter
    -acupuncture and chinese herbs
    -Prelief
    -UTA
    -instillations as needed
    -beginning yoga and specialized yoga for breathing and relaxation
    -Wellbutrin
    -Klonopin


    main symptoms: pain and burning

  7. #7
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    Dr. Oz show

    I think the idea of having Dr. Oz or another celeb do a show on IC would be wonderful!!!

  8. #8
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    I totally understand why they wouldnt want to make something this personal public. Besides that, if I were famous, I would want to be able to talk to people and have them respond here because they are interested in me as a person or interested in the topic I wrote about instead of trying to get to know someone famous. Unfortunately, there are alot of people out there that use anything to get close to someone famous....even a disease.

    I remember when Farrah Fawecett had anal cancer, there were lots of crude jokes about it and lots of horrific speculation that had to be very humiliating and distressing for her and her family. I wouldnt wish that on anyone. So, I completely understand why no one famous wants to be the poster child for this.

    I do agree that we need more publicity. I mean, look what the Lyrica commercials have done for Fibromyalgia! It would be great if they made a commercial for Elmiron highlighting IC like that! But, I think the manufacturers know that it is the first line treatment so eveyone with IC is going to try it anyway, whether they advertise or not.

  9. #9
    ICN Member penneyjo's Avatar
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    http://www.doctoroz.com/

    This is the web site for Dr. Oz. Let's all go there and ask him to cover IC!!
    treatment:
    -I follow the IC diet to the letter
    -acupuncture and chinese herbs
    -Prelief
    -UTA
    -instillations as needed
    -beginning yoga and specialized yoga for breathing and relaxation
    -Wellbutrin
    -Klonopin


    main symptoms: pain and burning

  10. #10
    ICN Member crkshnks79's Avatar
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    I just used the Dr Oz link to "Share my story " about IC and many of the issues that go with it , here is what I wrote , tell me what you guys think?

    Dear Dr. Oz,
    My name is Lauren and I am a 31 yr old female with a debilitating condition called Interstitial Cystitis . Interstitial cystitis (IC) is a painful condition due to inflammation of the tissues of the bladder wall. The cause is unknown. The condition is usually diagnosed by ruling out other conditions (such as sexually transmitted disease, bladder cancer, and bladder infections).IC is frequently misdiagnosed as a urinary tract infection. Patients often go years without a correct diagnosis. On average, there is about a 4-year delay between the time the first symptoms occur and the diagnosis is made.Women are 10 times more likely to have IC than men.
    Symptoms

    * Pain during intercourse
    * Pelvic pain mild to severe
    * Urinary discomfort mild to severe
    * Urinary frequency (up to 60 times a day in severe cases)
    * Urinary urgency
    There is no cure for IC, and there are no standard or consistently effective treatments. Results vary from person to person. As long as the cause is unknown, treatment is based on trial and error until you find relief.
    Other medicines may include:
    * Elmiron is the only FDA approved medication for IC , although it does work for all patients
    * Opioid painkillers for severe pain
    * Tricyclic antidepressants such as Elavil (amitriptyline) to relieve pain and urinary frequency
    * Vistaril (hydroxyzine pamoate), an antihistamine that causes sedation, helps reduce urinary frequency
    Other therapies include:

    * Bladder hydrodistention (filling bladder with fluid)
    * Bladder training (using relaxation techniques to train the bladder to go only at specific times)
    * Instilled medications - medicines are placed directly into the bladder. Medicines that are given this way include dimethyl sulfoxide (DMS), heparin, Clorpactin, lidocaine, doxorubicin, or bacillus Calmette-Guerin (BCG) vaccine.
    * Physical therapy and biofeedback (may help relieve pelvic floor muscle spasms)
    * Surgery, ranging from cystoscopic manipulation to bladder removal (cystectomy)

    I am writing to you because many doctors do not seem to know or have a true understanding of this condition , it can can absolutely be DEBILITATING. I know because in September 2010 I won my permanent disability w Social Security and I am young . This condition and many other secondary issues that go along w IC has ruined my quality of life . At this point my doctors do not know what else to do for me except to remove my bladder entirely but they say that will do nothing for my intense constant pain , only my frequency ( I urinate upto 80 times on a "bad day" and on a " good day" up to 50 or 60 times ). It took me over 4 yrs and over 27 doctors to figure out why I had chronic pelvic pain . These doctors ranged from Gynocologists , General surgeons (they removed my appendix just because I was in pain even though my appendix was fine ), Primary Care Physicians , GI specialists , Urologists , Endocrinologists , Pain management specialists who still refuse to treat me because " Chronic Pelvic pain is not a real issue". NONE of them knew what was wrong w me , alot of them were downright hurtful and have said to me " Stop being such a silly pathetic girl , nothing is wrong with you , stop wasting my time " to " Its not real , its all in your head " or " Its obvious that you are drug seeking " and " It says here that you have been depressed , so continue taking your Anti-Depressant meds and it will all go away " and many more . This is not uncommon w my condition , I belong to an amazing web support group " ICnetwork.com" and 90% of these women and men and parents of young children w IC have many horror stories of indifference , neglect , uncompassionate and downright baffled doctors . We are tired of not being heard and thought if maybe you worked IC into an episode that maybe doctors and people alike would begin to understand the magnitude of this disease and how it can destroy so many lives . Thank you for taking the time to read all of this , I hope you can help us be heard .
    Sincerely ,
    Lauren Myers


    Lauren

  11. #11
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    I believe there is a professional woman golfer with IC & also an actress on the Young & The Restless soap. Good luck with your Dr. Oz letter!

  12. #12
    ICN Member Snowden1's Avatar
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    Good letter, I wonder if you will get a response.
    Teresa

    We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

  13. #13
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    Celebrities w/IC

    The WPGA golfer w/IC is Jan Stephenson-- sp? She was pretty open about it at one time. The soap opera actress is Melody Scott Thomas-- or I may have the 3 surnames turned around. Pamela Sue Martin was Dr. Larriane Gillespie's patient and contributed to a cookbook.

    I think it is more difficult for women, in general, to reveal certain health issues that freaky people run with. Some people still have a way to go to evolve into compassionate beings. Sad...

  14. #14
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    Kudos Lauren

    You did a great job writing the letter!

  15. #15
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    Dear Lauren,

    Your letter is one of the best, (if not THE BEST) letter I have ever read that an IC patient has written to one of the celebrities to encourage them to produce a program about IC. I pray that it will produce results. However, unfortunately, I am not overly optomistic that this will happen simply because numerous IC patients have already written to every show imaginable for this very reason and nothing has ever materialized. We have even campaigned several of them at the same time by sending in petitions signed by countless IC patients/viewers with our request, but our efforts are always in vain. (Oprah and her affiliates are one of the main ones that our patients have repeatedly contacted in vain.) But, I do wish you well in your endeavor and hope that your letter is the one that finally makes the difference!

    But, one thing I HAVE noticed is that when IC patients contact their local media, they seem to have much better luck. I have seen numerous patients make a huge difference at the local level by writing or calling their local newspapers and tv stations and asking them to do a story about IC. In fact, just this past month in my city, our local monthly magazine featured a story about IC written by a local OB/GYN. It was an excellent article except in was lacking one crucial bit of info.....that sometimes patients require narcotic therapy for pain management. Other than that, I thought he did a very good job explaining what it is, how to d/x it (including the tests involved), how to treat it (the meds, treatments, diet, therapies, etc.). He also listed the symptoms, as well as some of the co-existing diseases. He also mentioned the profound impact is generally has on the lives of IC patients and their families. So, I generally thought he did a good job on the article. (By the way, this magazine has been in production for 1 and 1/2 years and he writes one article per month for it, and already he has written 2 articles on IC!!!!) (And yes, I called to thank him for writing about it and to commend him for how well he wrote about the subject matter. )

    Anyway, I hope I did not discourage anyone from writing to whatever celeb they wish. After all, you never know if your's will be the one that makes all the difference! But, I DO want to encourage each of you to write to your local media outlets. I have seen much more responses from the local ones than I
    have the ones on the national level.

    But, once again, great letter, Lauren!

    Sincerely,
    Amaranthe

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