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Thought i had urethral stricture... now i have IC

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  • Thought i had urethral stricture... now i have IC

    hello everyone I'm new. So i was just diagnosed with IC yesterday. I've had what i've called "bladder" problems since i was probably 12ish... so almost 12 yrs. My old urologist dialated (sp) me 2x, that helped ALOT. Now my uro says that i shouldn't of had that done and that I have IC/PBS and put me on some meds. Hopefully they work... but right now... i'm in pain!!!! i had to get a cathider(sp) in yesterday... can that irritate it? anyways... i know the major problems for me. I have been living with it for over a decade. For me is SODA!!!!, Beer/alcohol, the typical stuff. But i still have the flares even when i TRY to cut these out. so i suppose i should take a better look and see what i'm doing to hurt myself.

    The other thing about IC that i absolutly HATE is that NOBODY understands it. you say your in pain and its like okay whatever. I have to say i'm having "bladder" problems and people don't understand. My husband Def!! doesn't understand the pain. i think he trys. And the fact that during flares sex hurts DOES NOT help. anyways.... i've been rambling.. i just wanted to introduce myself, Hope everyone has a flare free day!!!!!

    Earlybird

  • #2
    to the ICN!

    Glad you found us here! I'm sorry to hear of your diagnosis, but you've found a great place for support and information. People here are great and are always willing to listen -- so ramble away as much as you like

    Have you looked at our Patient Handbook (http://www.ic-network.com/handbook) yet? If not, check it out. It has a lot of great stuff in it... from descriptions of IC itself to lists and descriptions of different treatment options to self-help strategies. There is also the ICN Shop, where you can buy anything from great books on IC to IC friendly foods.

    You could try printing out some of the information here to give to your husband. Sometimes seeing everything in print, rather than just HEARING it, can help men understand IC a lot better. It's sad that they can't listen, but hope is not lost.

    We also have some Romance and Sex boards for you to check out... you can scroll down our main topic page until you find the Romance and Sex board, and you'll find lots of tips for more comfortable, easier sex with IC. There is also a new website started by Jill O., who started this one... it's called When Sex Hurts (http://www.whensexhurts.com), and there's a lot of info there as well. That one is private so you'll need to register to see the topics, but I invite you to come on by and talk sex with us
    ****
    Jen

    *Diagnosed with severe IC in 2004
    *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
    *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
    *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

    **I am not a medical authority nor do I offer definitive medical advice. 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.

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