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Was finally diagnosed with IC

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  • Was finally diagnosed with IC

    Hello everyone,
    I am new to this forum and was recently diagnosed with IC. I have been struggling with IC for a long time and have seen countless doctors all claiming that they were UTI's or PID. I finally saw a specialist in OBGYN who said I have never had PID in my life and that it was all due to IC. He diagnosed me based on the potassium test and through all of my symptoms. I am finally getting the treatment I have needed since I was 16 (I am 23 now). I have struggled so much with sexual intercourse, urgency, pelvic pain, and frequency. My doctor has me on several different drugs and I was wondering if the drug regime I am on has helped others as well. I am taking elmiron (2 twice a day), cymbalta (60mg), prosed (as needed), tramadol (as needed), lydocaine (for sexual intercourse), and oxycodone (for after sex or as needed). I am married with two children and after I had my second child things seem to have gotten worse on the pain scale. Has that happened to anyone else? Also my doctor encouraged me to go on here and get advice on how your treatment plans have worked for you. He wanted me to get opinions on hyperdistension because he was thinking that would be our next step if the meds don't seem to be working and I'm still in a lot of pain. I also wanted to know what are the pain medications that have worked well for some people. The tramadol worked well for awhile but it has stopped being effective so I was curious what was effective for some of you. Thank you so much and I hope to get a few responses.

  • #2
    Hello! I was just diagnosed last month.

    I am on Nucynta for pain. Before I got my diagnosis I was put on Hydrocordon. Of the 2 I MUCH prefer the Nucynta. The Hydrocordon gave me upset stomach and worst of all HORRIBLE nightmares. I am 27 and was waking up in the middle of the night wanting to climb in to my mothers bed.

    What's sad though is the HC cost me $10. Nucynta costs me $120.

    For the pain/frequency they both worked really well. But I don't have pain so much as I have frequency. Oddly though when I take a pain pill my frequency is helped. Maybe I just don't 'feel' the pain like others? Who knows heh.

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    • #3
      I also tried hydrocodone and it also gave me stomach problems (nausea and constipation). What is nycenta I have never heard of that? Do you take it regularly or as needed?

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      • #4
        It's a 'new' type of heavy duty pain killer. My doctor told me it's used for other conditions but has found it's mainly prescribed for bladder issues. When you first take it you have the option of taking as little as you want and can move it up to 1 and a 1/2 to really jumpstart things. After that you take it every 4-6 hours as needed. It does make me a little sleepy but I actually like that because it also makes me care less about how overwhelmed I am with IC heh. After my cysto has been the only time I have taken it dose after dose. Now I usually only take a 1/2 at night.

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        • #5
          Thank you for the suggestion. I will talk to my doctor about it at my next appointment. I really appreciate the info since pain is the biggest problem for me to deal with. There are so many pain drugs out there and it's nice to know what ones are especially good for people with IC.

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