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Scheduled for a hysterectomy, but doing it only for hormone related IC

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  • Scheduled for a hysterectomy, but doing it only for hormone related IC

    Its been a while again since I have been on here, my IC never improves and my life is basically ruined so I dont want to be on here all the time scaring people. Its been 6 years that I have been in this horrible flare with little repsonse to anything. I have had a total of 13 IC related surgeries including 4 interstim sx's. My life is basically pain and pain pills. Nothing else has helped, I have chased every purple unicorn.
    The only thing that has been the same for the last 6 years is that I have increasing hormonal problems / perimenoapuse. I was 40 when my IC went crazy and that was about a year after my cyles started acting weird. Now I am just as sick from my hormones as I am from my IC. I flare horribly during ovulation, then it will continue and taper back a little until my cycle starts. I am irregular now, anywhere between 16-34 days. I wish it would quit, but I am only 45. The only thing my doc, who I trust, but surgery is how they make money... recommends at this point is doing a total hysterectomy and then hormone replacement. He says if I try to do hormone replacment now, my hormones will still be out of whack since my bodys hormones are so messed up. I have tried birth control pills and progesterone cream/pills, none of it helped. No one will let my try estrogen until I do a hysterectomy because of the cancer risk. I offered to sign something saying I was OK with getting cancer, at least then my suffering may eventually end.
    I dont know if I want to do this surgery, the horror stories I read far outnumber anyone saying anything good. I have already gained 30 lbs the last few years from the hormone problems, and am afraid to gain more. I would though be willing to be big to get rid of my IC pain. I am scheduled July 5th.

    Thanks for any advice.
    I have basically done every treatment for IC except cyclosporine and botox. Everything has failed. I live on pain meds all day. My diet is so strict that I now have multiple vitamin deficiencies. I have also tried numerous alternative therapies. I would do a cystectomy, but doctors seem to think living in pain is better. Currently taking Synthroid, Elmiron, Percocet, Toradol, Desert Harvest aloe. Interstim done 4 times, what a waste. Also newly diagnosed with Hunners Ulcers on cysto. Now disabled due to IC. A body of life, a bladder of hell.

  • #2
    Re: Scheduled for a hysterectomy, but doing it only for hormone related IC

    Oh I forget to add, I have never had kids, no fibro, no endo... nothing abnormal with my uterus, just hormonal hell. I had a disgnostic lap that was negative.
    I have basically done every treatment for IC except cyclosporine and botox. Everything has failed. I live on pain meds all day. My diet is so strict that I now have multiple vitamin deficiencies. I have also tried numerous alternative therapies. I would do a cystectomy, but doctors seem to think living in pain is better. Currently taking Synthroid, Elmiron, Percocet, Toradol, Desert Harvest aloe. Interstim done 4 times, what a waste. Also newly diagnosed with Hunners Ulcers on cysto. Now disabled due to IC. A body of life, a bladder of hell.

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