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(Cricket) To Jen_Cole

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  • MelanieJ
    Hi Jen.
    Nope, I'm an IC patient. I've been a moderator here on the boards for a couple of years now and have gotten to know Cricket and her situation from reading her posts. Though I'm sorry that you both have EC, I'm sure glad that you've found each other here! Very interesting about your brother also having EC. Definitely sounds genetic. Keep us posted on how you're both doing, okay?

    Sending healing wishes,

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  • Jen_Cole
    Thanks, Cricket. I'll have to get in touch with my dr. I keep saying that, and I never remmeber to call him. I think I need to make that a priority, though. I have been getting really depressed on and off lately-I just wish this was all a horrible dream. Never seem to wake up, though. My frequency was about 15 times a day about two months ago, then my meds quit working again, now I'm back to going every hour or so. Do you know what caused your ec? Does anyone? When you say you take morphine for pain, is the pain you have intermittent, or constant? The only time I have pain is when I "go", that's when the spasms occur, but other than that, I don't have pain. I would like to know if you know of anything you can take orally or topically for vaginal irritation? Sometimes I itch like crazy down there, but nothing I've tried seems to work. I think the hubby is becoming more and more irritated by my lack of desire to have sex.

    Melanie-thank you! Do you also have ec?

    One more question for anyone who may see this-I would like to contact any doctors who may be interested in hearing about myself and my brother. Seeing as how we both have ec, I wonder if it may be hereditary. If it would help me, I'd like to talk to any physicians about our problem. Thanks!
    Jen C

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  • MelanieJ
    I just had to sneak in here and say I'm so happy to hear you had a remission! That's wonderful news! I'll be praying hard for you and Jen. You're absolutely right - now that you know it happened once, you know that it is possible in the future!

    Tons of hugs and support,
    Melanie J.

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  • Cricket
    started a topic (Cricket) To Jen_Cole

    (Cricket) To Jen_Cole

    Hi {{{{{Jen}}}}}

    I'm so sorry to hear that you're having to deal with so much frequency. I know how frustrating that is. Ditropan, pyridium, and many other antispasm meds didn't work for me at all. The best antispasmodic I've used, and the only one that ever helped, is called Trac-2X. It has the same ingredients as Urised (which didn't work either), but they're in different quantities. Whatever the recipe is, it worked great for me.

    Since learning to relax my muscles, including my bladder, I haven't had a problem with major spasms in years. The minor ones are aggravating, but I don't take any antispasm med at all. This has really lowered my frequency. Instead of having to empty my bladder every 10-15 minutes I can hold it for 45 minutes to an hour.

    For pain management, the oral meds I take are neurontin, elavil and morphine. Neither, by themselves help, but together they're a winning combination for me. Along with those, I have two types of nerve blocks done at the same time twice a year - the superior hypogastric, and the lumbar epidural.

    Are you ready for this????.... After 9 years of 24/7 misery, I had a remission for almost two months!!!!! It was amazing! No bleeding, very little pain. Gosh, I'm still reeling from the happiness! [img]biggrin.gif[/img] The EC symptoms are starting to sneak back, but that's ok. I'm just so thankful for having that period of relief! So, now we know that it CAN happen. And maybe it'll happen again some day, for both of us!

    I hope that you'll find something that will work for you. Keep me posted on how you're doing.

    I'll keep you in my thoughts and prayers.

    With Love,