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  • The Doctors

    I decided I would put it here now. I don't know how many people will read it. Of course, it would not be a big deal for some people, but I am thankful to know IC was mentioned on "The Doctors" on Tuesday. OK. I was not viewing, but I just watched the video online. Yep! A female called about painful sex. OK. The female doctor asked about the kind of pain and if she had some bladder issues as well. She said she did have IC. OK. The female doctor did tell her about some things that may help. Also, she even mentioned some food and drinks can irritate the bladder.(especially with IC)(and even mentioned PBS as another name) OK. I am not thankful the caller has got IC, but I am still glad an IC patient called in. (and since so many of us do have it)(but not thankful we do) Oh! She did not mention IC Awareness Month, but she must not be aware of that. Oh, well!

  • #2
    Hi, Statesboro ~ Thanks for sharing this....I wish I'd have seen it. It's so true about how many haven't even heard of IC....like most of us who have been diagnosed after we've treated our symptoms with all the "traditional" causes first and this is great awareness of this disease.

    Hope you're doing Ok lately....
    Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

    11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
    8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
    8/2010 Surg gallbladder
    TREATMENTS (updated 4/15)
    IC Diet since 8/2009 (Able to vary 4/15)
    Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
    Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
    Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
    *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
    Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
    PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

    Comment


    • #3
      What great news!!!! Thank you for letting us know about this.

      I hate that someone else has this dreadful disease, but it is great that the word is getting out. Hopefully, someone who needed to hear what this lady had to say heard it and finds hope and treatment.
      Sharon

      Shopping??? Did someone mention shopping? I'll get my hat... ;-)

      Where I can be found most days.



      Link to the ICN Patient Handbook:
      http://www.ic-network.com/handbook/

      Link to the IC Diet:
      http://www.ic-network.com/diet/


      IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      Comment


      • #4
        Statesboro,

        That is very good to hear, I am glad you posted it. Seems like more awareness in general of this disease is slowly happening which can only be good for all of us. Here's hoping that more awareness leads to more effective treatments and maybe one day a cure or at least a prevention.
        -

        Symptoms: started July 2007

        New pain medication regimen has things under pretty good control for many weeks now. Exercise and eating healthy along with pain control have given me new life.

        Current Symptoms: pain in testicles, penis and general groin area. Other discomfort that is beyond pain, a maddening crazed feeling that defies description. New pain medication has most symptoms under good control.

        Frequency and urgency was a problem the first year or so but frequency is normal now.

        Diagnosed: Prostatitis first then IC by Cysto/Hydro

        Current Meds: Hydroxyzine 25mg 3 x day, Pyridium 200mg 3 x day (off 3-4 days on 3-4 days), Oxycodone, Norvasc (BP).

        Past medications and treatments:
        Protatitis and IC diet strict for 6 months, no change. Still watch diet although nothing seems to help or make worse. Have tried reverse, ate lemons to see if worse but no change at all.

        Meds tried - Amitriptyline, Detrol, Flomax, Cipro, Doxycycline. many other antibiotics, Uroxatrol, Vicoprofen, Elmiron (6 months at $320 mo nothing), Aloe, Cysprotek, Glucosamine, Marshmallow, various oils, tons more stuff to strange and numerous to recount. Hydrodistension for diagnostic was horrible for two weeks after I was sure I must be going to die because nothing could feel that way and let you live.

        Comment


        • #5
          This is good to hear! I watch the show, but not every day. Do they have a link to the conversation online? Did they call it IC or interstitial cystitis? Just curious!
          Julie Beyer, MA, RDN
          IC Dietitian, Patient Advocate, Speaker, & Author


          Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

          Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

          You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

          ........ ........


          Other IC Diet Resources:

          IC Diet Webinar
          IC Diet Website
          For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
          Free IC Diet Booklet: What Can I Eat?
          Confident Choices IC Diet Blog
          IC Diet Newsletter


          *Let's Connect!*

          Comment


          • #6
            My post was done back in the early fall, but I went to the website and found the video.(the clip on the phone call and the answer)By the way, I do believe the name "interstitial cystitis" must have been mentioned since the nurse was saying it can be called painful bladder syndrome as well.

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