No announcement yet.

Returning from about 1 year ago or more, Really Need Support

  • Time
  • Show
Clear All
new posts

  • Returning from about 1 year ago or more, Really Need Support

    Dear friends,
    Hello...I hope to write more later when I am at home.
    I am not even sure if some of my old posts are still here...It sure would be interesting to see if they are still on here, as I could sort of track my story and see how far I have come.

    I was in Remission from IC since October up until about a month ago and now it is back in full swing and force.

    I have a long story...I battled doctors valiantly, tried to be a voice for all of us with IC and nobody was listening here in Washington State...Iwas treated in a compassionless manner by the doctors and I kept on fighting to be a voice for myself and those with IC. I am writing a book about it. I am writing a book about Pelvic Pain currently and cannot wait to share my story about my journey (With an Addendum "To be determine or continued" part about my current struggle.

    Now I am having CONSTANT urgency...It had never been this bad before, and horrific stabbing and burning pains AND an infection that they cannot seem to diagnose properly.

    I am going in tomorrow to get diagnosed for my Cat Scan and I truly hope they can get some kind of Result on the recent pain...I have never suffered this much. I hope to make some new friends, re-connect with old ones, and be a support to others here.

    Some negative people scared me off the board before, but I will not be scared off this time as there were too many good and positive people out there on this site for me to not have that blessing of support...

    Please let me know if you are in pain and maybe we can help each other?

  • #2
    back again

    I don't think we were posting at the same time before,(I was DX'd last May).

    I'm sorry you are having to return after a long remission, but I think it's good that you decided to come back-there's so much support here.

    I also have that constant urge, with pressure and pain. Like you, I was feeling much better for quite a while, and then it all started again, worse than before. I don't know what triggerd this flare, but am now watching my diet very closely again,(I did stray a little, though not much, so maybe that's the cause) and trying some new meds. We'll see.

    I hope you can find some answers here.



    • #3
      Hi Rebekah,
      Welcome back! I'm sorry that you are not feeling well again and hope that your doctors can find some answers to bring back your remission. I'm always hopeful if someone has had a long remission in the past, that it can happen again! I hope that you will find much support and understanding here. I've found that we IC-ers understand each other in a way that many people who do not have IC do not. I'll be praying for wisdom for your doctors and strength for you in this new development and that you will find relief soon.
      Wishing you better days very soon,

      I am not a medical authority nor do I offer medical advice. In all cases, 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.

      New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
      Source - Pinterest

      Current treatments:
      -IC diet
      -Elavil 50mg at night
      -Continuous use birth control pills (4-5 periods/year)
      -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
      -Pyridium if needed,
      -Pain medicine at bedtime daily, as needed during the day several times per week
      -Antibiotic when doing an instillation to prevent UTI
      -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
      -Dye Free Benadryl 50 mg at bedtime
      -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
      -Managing stress= VERY important!
      -Fur therapy: Hugging the cat!