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Reposted for new member jen74

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  • Reposted for new member jen74

    Today, 07:41 AM #14
    Registered User

    Join Date: Feb 2007
    Location: I live in Chicago IL
    Posts: 6 IC pain and instillations


    Hi Gals.
    I am rather new to this group. I am 32 years old and have IC. I started having pain issues with it since last May. I tried elmiron, but it gave me side effects so I stopped it. I tried hydroxyzine, but it was not really helping me so after a month I stopped it. I am seeing a new urogyne who said she does instillations using heperain, lydocaine,steroids, and biocarbonate which is like a bladder cocktail. She said alot of her patients get relief with this. I have to do it once a week for 6 weeks.

    Have any of you had these instillations and did they help you? I also just got over having a nasty UTI which really ran me down as far as pain is concered. I just finished my last antibiotic this morning. I am very concerned because I have no clue as to how I could have gotten a UTI. I mean my hubby and I have not had sex in months due to all the pain I am in, also I try and be very clean as I can down there. I have no idea how in the world I got this UTI. Also, It made my IC sooooo much worse. And that bad part was, I usually buy the over the counter UTI test strips, and they did not even pick up the infection. Only the culture did. So now I have no clue how I will even know if I am coming down with an infection or not. It is so hard to tell when you are in severe pain already. And I know that having infections can make the IC way worse.

    Also, I wanted to know if any of you have done installations yourself at home? Is it hard to do?

    I believe my pain in the bladder is located mostly at the bladder neck as that is where it feels like it is. I also know my upper part of the urethra closest to the bladder opening is inflammed, as my urogyne I had before said he saw this during a cystoscopy.I have a constant burning feeling in there all the time. I also get really bad pelvic pain at times. NOw my period is due and that is going to make things alot worse.

    Also, do any of you ever feel like you dont empty the bladder all the way after you pee? I have been experiencing this off and on for the last week. I am not sure if it was because I had an actual infection on top the the IC that was causing this. I went to my urogyne This past Tuesday and the nurse had me pee and then checked to see how much was left in the bladder which was not much at that time(like 10ccs). But I know that at other times I think I do retain some. I know because I drink alot of water every day because it helps to dilute the pee and it is not as acidic. Well, I noticed that like three days ago I would not pee nearly as much in amount as I usually do(and I was drinking the same amount I always do, even more because of the UTI) and I would not even get up in the middle of the night to pee and when I did pee first thing in the morning I would only go like an ounce or two, but when I pressed my pelvic area, I felt like I still had to go alot. But it happens off and on. It seems as the day goes on and I drink more, I feel like I empty better. But at night it gets worse, which is weird because I am drinking.
    I fear I am going to lose control of my bladder and it will shut down on me and not work at all and I wont be able to pee at all. I know there is the ER and I could get a catheter, but I am going to be honest, I dont think I could tolerate a cath in place for more than a few minutes because of all the pain I have in there. Is it common for the bladder to just stop working with IC? What do you gals do if this happens? Sorry for all the questions, I am just still trying to learn, and still very scared. Thanks.
    Stay safe

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  • #2
    I have done home instillations since 2004. Click on the link in my signature for helpfl hints for home instillations. I think they are great!
    TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
    My Helpful Hints for Home Instillation:

    Institute of Female Pelvic Medicine (J. Dell, My MD)
    Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
    I post to encourage and offer total support for rescue instillations.
    Find me on facebook: L. Clark Thomas