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  • jen74
    replied
    Hi Trish.
    I did not have a hydro. I just had a bladder installation, and it made me so bad where I could not even pee. Then I felt more pain than before the instill. I just dont think the instills are the thing for me. I think the instill made my bladder swell up or something, cause I could not pee at all for a few hours. Then later at night I still had alot of pain, worse than before the instill. The nurse said that maybe the med was trying to work. I more less think my body was telling NO, that this is not the way to go. Our bodies tell us when something is not right usually and me not being able to pee after the instill and having more pain tells me that that stuff they put in me was not good for my bladder. I just feel I am at a loss now. I dont think this urogyne offers any other sort of treatment. Thanks again for replying Trish.
    Jen

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  • jen74
    replied
    Hi Barb.
    Thanks, I would really appreciate that. I just cant seem to find any good doctors here in Chicago. It is terrible. If you know of any please let me know. Even if they are somewhere close to chicago that would be fine too. Thanks again.
    Jen

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  • Trishann
    replied
    Jen I am sorry that you had a rough time with this hydro. I can't believe they wanted you to hold it in for at least two hours. I don't know what to tell you, just want to say I hope things start getting better.

    Sending hugs, Trishann

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  • Babs RN
    replied
    Jen,
    First of all, I am so sorry for your ongoing torture. I went to college in the Midwest(that had a medical school)and have alot of friends who are docs and there is an alumni club in Chicago. Let me nose around and see if I can find some names for you. As a nurse, I am flabbergasted that these nurses are acting like such nitwits. Are they waiting for you to keel over or what?

    Hug and love,
    Barb

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  • jen74
    replied
    Hi mellusk.
    Thanks for the info. I went for my first instill yesterday and it was a nightmare! They put the stuff in (heperain,marcaine,kennalog,biocarbonate) cocktail. I was told to hold it for two hours if possible. It made everything numb at first, so numb I could not feel anything. After two hours, I tried to pee, and I could not. Everything was swollen I guess. THey had to cath the stuff out.
    Well, they sent me home with a coupld catheters and told my hubby how I help me use the caths if I could not go at all. But she said that if I could at least get out an ounce or two, that was ok. I was able to get more out as the night went on, but still no where near back to normal, and my pain is worse this morning than it ever was. I just dont know. I am losing faith here. The nurse acted like these instills work for everyone. She said sometimes it takes a few times, but I am sorry, there is no way in hell I am going through this again.
    If you could send me the info on the doctors you know in Indianapolis, I would really appreciate it. I am also going to call around and see if I can find any othere doctors around here in Chicago. Thanks again.
    Jen

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  • mellusk
    replied
    Jen, I know you don't want to switch to someone else, but I think we can all agree it might be time to try yet another one. I cannot believe in some place as huge as Chicago is that you can't find someone to help you. If anything, get a list of doctors and clinics that are covered by your insurance and start calling them. It seems like you just keep getting referred around within the same circle of narrow-minded doctors who act like they all took the same weekend seminar once in Las Vegas for IC. I live in a city of only 200,000 people, and I'm getting much more support and care than what these people are offering you. Maybe since they are all supposedly the best of the best, they're overworked and unable to give proper attention to something that's not easily categorized. Maybe instead of going for some hotshot big wig, you can find a younger doctor who isn't entrenched in an outdated rut.

    Also, I know Indianapolis is two hours away from you, but would it be feasible to see if maybe you can go see someone there? My physical therapist has a colleague that works for her same company (Physiotherapy Associates) who specializes in Women's Health Issues, and she is very knowledgeable about IC. My therapist has been in contact with her about this, and she fully understands how horrible this disease is, which means she probably has contact with a base of doctors sending her patients. That leads me to believe that there are at least a handful of good, responsive, helpful professionals in and around Indianapolis who might be of use to you. I know because of the different universities near there that the medical community around that area is often state-of-the-art, and my friend with a rare form of muscular dystrophy and got horrible care down here found a wonderful, if busy, doctor in Indy associated with IU who has really done a world of difference for her.

    I hope something gives for you soon.

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  • sweettabby
    replied
    You know what upsets me. These urologists really need to be more updated about IC. Is it because they don't run across it very often that they won't even try. I mean different treatments work for different people. I am so happy that my IC rarely flares anymore but when it does I always had to get the instills and I hated it because half the nurses at my hospital don't do it right and the one nurse that I have been with for so long isn't always there. I'm glad I don't have to go very often. Good luck and I pray you get relief and find a urologist to help you.

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  • Bianchi
    replied
    I dont know what it is with UROS, even Dentists give you pain meds, when you need it. My URO does not prescribe pain meds either, but does refer to a pain clinic if you insist.
    Dont UROS know how much pain IC can cause, I dont get it.
    Bianchi

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  • jen74
    replied
    Thanks for the info. I hope that these instills will help me tomorrow. But if they dont, I am going to see if I can find another urogyne since this one does not seem to be willing to work with me as far as the pain is concerned. I just hope I get some relief.
    Jen

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  • streamside
    replied
    Withholding pain relief

    How cruel! You deserve and are entitled to pain relief for your IC. Have you considered a pain specialist? Some neurologists specialize in this. One urologist I went to finally told me he didn't know much about pain control and he referred me to a neurologist who helped me. They may give you something such as a long-acting morphine to take in addition to the Lyrica. I hope you get relief soon.
    Last edited by streamside; 03-22-2007, 11:05 AM.

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  • weezer
    replied
    Roxy: Thanks for the informative website. I'm somewhat leary as I'm highly allergic to anti inflammatories which is a huge problem, but I am seeing my uro when I go in for surgery early April so I will run it past him. It sounds very interesting and I love the fact that it is natural. Thanks for the infor Roxie.
    Weezer

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  • Ladybug51
    replied
    Instills

    Originally posted by Roxie2007 View Post
    HI no it's not like zylocaine. It's an anti inflammatory medication. Here's the website when I ordered mine and it can answer all your question. www.jacoblab.com If you end up ordering it.......please if you wouldn't mind.....put my name (Roxanne Busby) on the subject line with your order? I'm trying to work up to a full bottle in the new referral process I talked the company into. Thanks! Any more questions,,,,,,,, just ask! Roxie
    Hi I'm One Of The New Ones, With Ic, I Have Been reading About The One Girl That Her Doctor Would Not Give Her Pain Meds But She Had Instills Please Tell Me What That Is As I Don't No Nothing About That !
    Thank You Penny

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  • kari1980
    replied
    Jen,
    I really feel for you, the same thing happened to me yesterday! I was diagnosed 14 years ago and my Doctor in NY never had a problem giving me the Percocet when I needed it, now I have recently moved to SC and I called my doctor here yesterday for some percocet because I'm in so much pain and the nurse said he wouldn't give it to me...Now I'm in a panic because I've tried the instills and everything else and nothing works for me as well as the Percocet..I don't know what to do either, and I was wondering, for those of you who have been to a pain management clinic, how does that work? Do you just go in and tell them you have IC and they will give you pain meds? Or do they do tests, what do they do? I'd really like to know how that works..
    Jen another thing you may want to try is, do you have a regular family doctor that you use? You may want to try going to that doctor for the pain med, my family doctor in NY is the one that had no problem giving it to me, none of the Urologists would give it to me. It's crazy how they will just let us suffer! It makes me so angry. Good luck to you.

    Kari

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  • Roxie2007
    replied
    HI no it's not like zylocaine. It's an anti inflammatory medication. Here's the website when I ordered mine and it can answer all your question. www.jacoblab.com If you end up ordering it.......please if you wouldn't mind.....put my name (Roxanne Busby) on the subject line with your order? I'm trying to work up to a full bottle in the new referral process I talked the company into. Thanks! Any more questions,,,,,,,, just ask! Roxie

    Leave a comment:


  • weezer
    replied
    Roxie: What is the MSM gel? Ignore my ignorance please, but I'm in Canada and was wondering if it was similar to zylocaine gel? Sounds interesting - please explain...and again, forgive my ignorance.
    Weezer

    Leave a comment:

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