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In a flare and overwhelmed

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  • In a flare and overwhelmed

    God gave me a fourteen yr remission. Then I got shingles and severe phn pain. Flared about three yrs ago. Subsided. I was already on gabapentin and upped it to 4000 mg. Added Lactimal. Did O.K.
    Flared last yr. Because bladder was quiet but I was having intense vaginal itching under bladder wall (this was always part of my i.c.) I was sent to a vvdynia specialist. don't have vvdynia and she really didn't know what to do but next visit brought Pain newsletter from ICA and eventually she prescribed 2.5 mg Valium supp. I'd kept things under control for fourteen yrs with 30 mg. oral Valium prescribed by first neuro then shrink. When I got worse NP upped supp to 5. Found I needed two a day and wasn't taking oral dosage. New pcp got involved, tried to stop specialist from upping dosage, disregarded well known shrink, etc. Shrink stepped in and fixed things with V doc.

    My specialists have been AMAZING. I've been with them from fifteen to twenty five yrs and are heavy hitters. Got promising referral to pain doc from one doc who's not supposed to follow his former patients (he can only do research now) and have apt end of month. CFS specialist wrote three page referral. Neuro gave me oxocodone (doesn't help much.)

    Now I'm looking into pt. was dx'd with pelvic flr spasms thirty yrs ago when no one thought they were important. trained pelvic flr with TENS.

    I have Crohn's which has also been quiet for yrs (miracle) but I started having g.i. symptoms around time bladder flared. Not ibs symptoms. Having colonoscopy tomorrow. Have had some really good days with the bad.


    I don't feel pcp is really one since debacle (all my docs think I should get a divorce) and I have a lot of docs (Sjogren's, CFS, retractable GERD also)
    Am on couch with heating pad between my legs and trying to tell myself "this too shall pass."

    What do you guys do for retention, pain in uretha, etc.
    Have shrink appt tomorrow. And he is one of the great ones. When everyone said I was nuts, he stood by me.

    pt I called won't see me even out of pocket because I'm on Medicare (she said she got in trouble) so i'll have to find one that's farther away. actually she's only out of pocket.

    don't want to see urogyn recommended because these flares started after pelvic this time around. was not case yrs ago.

  • #2
    I feel your pain. I do hope that you are feeling better. Only you know in your heart what to do w/ your relationship. I find a good hot bath will help w/ the pain. Good luck and may God Bless You.

    "Through God All Things Are Possible"

    Topamax for Migraines 50
    Elavil 12.5 mg
    Lidocaine 2% 10 cc
    Sodium Bicarb 8.4% 5 cc
    Heprain 20,000 Units
    Hydroxyzine 25 mgs
    Valium Sup. 10 mgs.
    Phenegran 25 mgs.
    Amerge 2.5 mgs.
    Lidocaine Gel 2%


    • #3
      Thank you for your support. It's like a miracle; I woke up this a.m. pain free and my g.i. tract is the best it's been in months. One of my docs comfirmed what I described as urinary retention.