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  • Kirs10
    replied
    Thank you Donna,
    I will definitely make sure that it is the mixture you said. I can tell you that you it doesn't feel like this burning from the catheter is ever going to stop...
    Kirsten

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  • ICNDonna
    replied
    The stinging from the catheter should go away before too much longer.

    If you decide to do DMSO, you'll want to be sure the mixture is no more than 25% DMSO and that they instill either lidocaine or marcaine with it.

    Warm hugs,
    Donna

    Leave a comment:


  • Kirs10
    replied
    I went to my appointment this afternoon. It really went well, I did take my daughter with me so it wasn't just me. He asked some questions we talked about different things. He put me back on Elmiron, atarax, and elivil. So that will hopefully help some. I am going back in two weeks to try to turn the Interstim back on and adjust it...then he wants me to really think about doing the DMSO instills. He did tell me that he wanted to do a cath and then check to make sure that I don't have an infection. I had no problem with that but if I could do it all over again I would refuse. The nurse came in and got me all set up for the cath, and when she started I realized she hadn't used any lidocaine and the pain was excruciating. She got her sample and then pulled out the cath it was just like glass. Now I am dying. I can't get the stinging, burning, pain to stop. I have tried to shower, I have an ice pack down there, and nothing is helping. I took pyridium and pain meds and am just trying to figure out how to make this stop....

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  • hoping4acure
    replied
    I agree with ICN Donna. Take someone with you and if you can, bring a small tape recorder. That always helps.

    I went to a uro like this when I first got DX'd. I saw him once and only once. He said the same thing to me "If you don't do the DMSO, I can't help you" He practically had me in tears, but I wouldn't give him the satisfaction of letting him see me that way. We were finished with the appointment and he said "here let me show you the way to the door so you can run out of it!" JERK!

    So, Yes, I would do some searching. Looking at your meds, you seem to very stressed out. That is my #1 reason for flaring. My body just doesn't handle it well at all.

    Good luck, and please let us know how you made out.

    Leave a comment:


  • sabstory
    replied
    I would be unhappy if my doctor wouldn't let me choose whether or not to have a procedure done. I am not thrilled with my uro either, but I would not go back to him, or if I did I would make sure to let him know how uncomfortable you are, and make sure that you take someone with you. Sometimes I think doctors think they know it all, and can't abide with patients who have any knowledge. I noticed that my uro gave me the exact same speech about IC 3 visits in a row, he had no idea that he had spoken with me just a few days prior. When I ask about other treatment than he suggests he blows them off, sometimes he will say he hasn't heard of it, or sometimes he will say that doctors don't treat IC with this medication or treatment. I know sometimes that he is wrong because people on these boards are treated with the same things.
    I asked him about TENS machines, and he said that isn't a viable treatment for IC. I asked him about pain management, and he said that he doesn't like to treat chronic conditions with pain meds because then you have 2 problems, the condition and now an addiction. I was really upset at that visit because I didn't even ask for pills, I asked for help with this horrible unending pain. Even though I am still seeing him, I am looking for another doctor, I have an appt on June 21st with a new one. I've got my fingers crossed.

    Leave a comment:


  • Mothergoose
    replied
    Why are you so against the DMSO, have you tried it yet? Did you have a bad expirence with it or is it just what you have read here from others who didn't like it.

    People here seem to be 50-50 about if it is good or bad.

    If you have not tried it, maybe you should consider tring it, we all are different and react differently.

    I tried it, it was fine, but I was in pain for the first few days and had trouble peeing, and it wore off after 3 weeks.

    At least now when it is suggested I can say I tried it and then Dr.'s don't seem to act as if you are refusing their treatment.

    Most Dr's want you to at least try what they want before they are willing to try other things.

    Just my opinion MG

    Leave a comment:


  • Jinny Jean
    replied
    Good gracious! He seems like a real piece of work! Id second Donna on bringing someone and then I would get a new uro ASAP. You shouldnt have to put up with his torture.
    Jenn

    Leave a comment:


  • ICNDonna
    replied
    I highly recommend taking someone with you to this appointment. If you scroll to the top of this page and click on "Professionals" you will find some in Maine. There's also a support group listed and they are often a good source to find a caring physician.

    Warm hugs,
    Donna

    Leave a comment:


  • Kirs10
    started a topic Doctor

    Doctor

    I have an appointment with my IC specialist tomorrow and I am not going to lie it has me so stressed out I could just pass out. He is the meanest Doctor have ever had to deal with. He replaced an interstim device and I am not having any luck with it, but he refuses to remove it. He also wants me to have DMSO instillations, but I am just so terrified to do it. HE actually dropped me as a patient 5 years ago because I refused to have DMSO instills. He said I was refusing his standard of care and there was nothing else he could do for me.
    Does anyone have any suggestion on how to deal with him tomorrow. I am so scared to go that I am taking my daughter who is 20 with me to keep him from flipping out on me.
    When he did my last hydrodistention they called and told me all the things I could do before surgery, and stuff right. Well my time was at 2 so the nurse that called said you can get up and eat before 6 but nothing after 6. So I did just that I got up and ate breakfast and then stopped eating and drinking. They of course called me in 2 1/2 hours early so it had only been 6 hours with no food and he stood outside my door while waiting for the surgery and he proceeded to freak out. "Well, screw her then if she can't go 8 hours with out eating then she can deal with the pain and not have the procedure done today." He called me a liar when I told him I was told I could eat before 6. He flipped out for about 10 minutes and then one of the nurses said something and he agreed to do the procedure, but he was not happy about it. (And of course I was in the room alone because my husband had left the room for a minute to get some coffee. So as you can see the thought of seeing him freaks me out.
    I don't have any other choice of a dr in out area. There are two IC specialists in Maine and I have seen them both, and both of them need to go back to medical school and learn some bedside manner.
    I guess I have vented enough, but anyway so if anyone has any suggestions of things I could suggest with him to maybe get his mind off DMSO. Any suggestions would be great appreciated.
    Thank you all,
    Kirsten
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