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This forum is pretty inactive....anybody on Cytotec or have updated experiences?

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  • This forum is pretty inactive....anybody on Cytotec or have updated experiences?

    I'm jumping the gun with my enthusiasm as I'm very early on in this and haven't even seen a urologist yet, but that doesn't blunt my curiosity about this drug. Reading other's posts, it seems it's hit or miss, but for those that it works for, it restores some normalcy to their lives, especially in the way of pain reduction and in broadening their diet. I guess my interest was piqued when I read that it's optimal for women who aren't planning to have any more kids as I do not want children.

    If anyone could share their experience with Cytotec, I'd be grateful. Thanks!
    "Diagnoses"
    Vestibulodynia, endometriosis (dx via symptoms only), IC (dx via symptoms only), PFD, uneven legs, pelvic muscular dysfunction

    Present Treatments
    EMDR Therapy Dec 2013-June 2015; Mindfulness Style Meditation early 2014-Present; External PT Dec 2013-Dec 2014, daily exercises at home; Intervaginal PT March 2015 - Aug 2015 Chiropractic Mar 2014-June 2015; Therapeutic Massage Apr 2014-April 2015; cut caffeine out of diet; I lost my health insurance Sept. 2015!

  • #2
    I'm seeing my dr. about it tomorrow. He thinks it's worth a try. I have been on Elmiron since 2007 with good improvement but I have yet to be completely pain free and it has been a struggle to afford the Elmiron. My uro thought I should look for alternatives to Elmiron since I'm facing another 40 to 50 years of IC. So I've been doing a lot of research just to see what my options are. I emailed both my uro and GP last night about the Cytotec. My GP is experienced in prescribing it for ulcers so I will discuss it with him tomorrow. I'm also waiting for an appt at Stanford. I'm hoping I'll know if the Cytotec either helps or not before I see the doc at Stanford. I've got acid reflux and have recently had to take anti-inflammatories for severe tailbone pain so it would be nice if this drug could be a multiple benefit for me.
    The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
    First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
    Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
    Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
    Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
    BABY GIRL 10/28/08 *** BABY BOY 7/8/11

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    • #3
      PS I'm not having any more kids. My husband is going for a vasectomy consult next month!! And I'm on the pill.
      The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
      First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
      Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
      Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
      Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
      BABY GIRL 10/28/08 *** BABY BOY 7/8/11

      Comment

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