Latest Blog Article: Extreme Heat Prevents Shipping Of CystoProtek & CystoRenew For A Week - June 17-23, 2017
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  1. #16
    ICN Member
    Join Date
    Mar 2017
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    33

    Re: CURED! It's over!

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    Hey Morgan,
    So happy D Mannose is working so well for you. If your pain is down to a two after just a couple of days I would stick with it at that dose for at least a couple more. You have nothing to loose! My pain suddenly went to zero! And is zero right now. I'm still taking the regular maintenance dose of one teaspoon twice a day, and bump that up after inter course, as that seems to be my problem. Just simple E. coli infections that are resistant to antibiotics. I don't believe I'm Auto Immune, and can't help but wonder how many more of us may be the same? Maybe none, but it's sure worth a shot.
    I had hydrodistention and it made me worse if anything. Surely not better. I wish I had not done it as it's always risky going under full anesthesia, was expensive even with insurance and invasive.
    Please let us know how you feel if you keep it up for several more days.
    Good luck! Have a nice weekend!

  2. #17
    ICN Staff ICNDonna's Avatar
    Join Date
    Mar 2000
    Location
    Oregon
    Posts
    41,234

    Re: CURED! It's over!

    Quote Originally Posted by Morgan123 View Post
    Thank you for all of your encouragement so far ladies. I am on day 3 of pure d-mannose and it has made my symptoms considerably better. Before I would have rated my pain, urgency etc. an 8/10 (10 being a lot of pain). After taking d-mannose every 2 hours the pain has dropped down to a 2/10.

    Donna, I have a question for you. I have read somewhere in another thread that you have always had great success with hydrodystension. I had a cystoscopy 10 months ago and was COMPLETELY symptom free for 8 months. My symptoms came back 2 months ago one night. And ever since I have been adhering to the IC diet, flushing with water, cut out coffee and had no culture in urine tests but nothing has helped.

    So my question is, what is your opinion on hydrodystension as an ongoing therapy for IC sufferers? Have you found success with this type of treatment in the long term? How often do you get the procedure done? Do you think that if I had success with it during my cystoscopy when I was diagnosed that it will work again? (I know you are a support offerer and not a doctor, but your advice/story/experiences with this as an ongoing treatment would help me a great deal when I ask my urogyno at my next appointment). I have noticed you have a lot of knowledge and experience with IC which is why I value your opinion or advice.

    Thank you kindly. I hope everyone in this thread is doing really well and feeling stronger every day.

    Kindly,
    Morgan
    Yes, I am one who is helped by hydrodistentions. However, I don't recommend it as a first treatment --- since you did have 8 months of relief, it's an option you might want to consider. If you opt to do another hydro, I strongly suggest you be sure it will be a low pressure one. I have had both high and low pressure hydrodistentions and found low pressure helps as much as high --- with less potential harm.

    Warm hugs,
    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

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    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Anyone who says something is foolproof hasn't met a determined fool
    .....My Meggie.....

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