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horrid flare, losing hope

Discussion in 'General Discussion Subforum' started by NicoleB34, Nov 30, 2017.

  1. NicoleB34

    NicoleB34 Well known member

    So i was doing well, (as well as can be, my baseline pain was about the same, but i was out doing physical activity without flareups, and i credit that to accepting TMS and using mind/body approaches) and September was my best month yet. I had just went on vacation and mountain biked 60 miles which was astonishing considering i have pelvic pain.

    then in October something happened. It could have been a stressful work week, i dont know. My pudendal neuralgia flared up really bad. I had a recurring knotted pelvic floor, the pain would wake me in the night (that never happened before) and the pain was pretty much 24/7 rather than up and down throughout the day. I tried my best not to freak out, but it was really hard when you're trying to have a life and hold down a job in that immense amount of pain.

    Then my worst fear happens. My interstitial cystitis came back.

    A little history. I have had IC for 17 years technically, but it's usually in remission. i consider my urinary tract always a bit sensitive, but as far as a true painful flare, i've only really had 3 of them. My last flare was in 2015, and it lasted a whole year and it was a living hell. Some of you may recall my story. The pain doctors thought my IC was a bit atypical, so they gave me a nerve block (pudendal) to rule out other pelvic pain disorders. Well, the nerve block badly irritated my pudendal nerve, and i got PN from it!!!! Well, initially it irritated the nerve, but i believe the reason the pain stuck around was TMS. Not surprisingly, my obsession with this new diagnosis which nearly disabled me (painful sitting, couldnt mountainbike, which was my LIFE) make me forget all about my bladder pain, so guess what? IT VANISHED. That should have been my first clue that something was going on in my brain, not my bladder. This bladder pain had been raging fora full year, no sign of stopping, but since i had a new condition that was ruling my life and my mind was so focused on that hell, the bladder took a back seat and just stopped. My big fear though, was that it would come back and i'd have two hellish conditions to live with.

    Well that seems to be the case now. i'm trying to calm down. Deep breathing, trying to tell myself "well maybe this is temporary...it has been temporary before". I know deep down i cannot live with both these awful conditions. I can barely work, i cant keep a romantic relationship, i feel bedridden.

    How can i dare get out of this doom feeling of having these two issues? i'm near certain my nervous system was on overdrive from the PN flare, and that's what initiated the bladder to wake up.
  2. Click#7

    Click#7 Well known member

    Wonder if your immune system has something to do with it. That is the reason I refuse to get flu shots LOL. Everytime I get one something happens.
  3. NicoleB34

    NicoleB34 Well known member

    Well i do have psoriasis and the possible beginnings of Hashimotos. Autoimmune disease runs in my family pretty heavily.
    Click#7 likes this.
  4. JBG1963

    JBG1963 Peer Supporter

    Each time I have a new symptom, I try very hard to think psychologically instead of focus on my various physical symptoms, that change all the time. Why do I have this pain today? What psychological stressors are going on? What feelings am I unaware of or avoiding? This kind of thinking often leads me to the truth and then much of the pain subsides until the next time it decides to pop up. I'm hoping that the more I confront it each and every time the less times it will keep coming back. Hope this helps. Good luck to both of you.
    Click#7 and plum like this.
  5. NicoleB34

    NicoleB34 Well known member

    Pretty sure that the IC disappeared the first time because something worse came along that made me forget about it. So i worry it wont go away until something catastophic takes it's place. That's negative thinking, i know....
  6. JBG1963

    JBG1963 Peer Supporter

    I know what you mean, though. I keep hoping to get rid of my current aches and pains and truly be cured before they morph into something else.

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