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  • Middle Georgia

    Is there anyone in middle Georgia that has ic? I live in Ashburn ga and I wanted to find people who are going through ic too. I wanted to start a support group for us. I would love to get middle Georgia informed on ic and all the issues we deal with on a daily basis.

  • #2
    Well i am not from middle Georgia, but near the Athens area, if too far we can at least chat.
    Dx 2005. Worsened w/preg in 94. Voiding 100 x. DMSO in 04= 7 weeks, worsened. Saw urogyno 05. Started heparin, kenalog lidocaine, helped a few hours. Referred to uro who implanted stim in 06. Trial great, w/99% improvement. Not seen same w/perm implant, leads were placed in rt. labia which caused me pain to set on therapeutic level. Leads were placed in butt w/trial stim, & not painful to turn up. Having revised 11-19, done while awake, so can ask where I feel pulses, so can be placed in butt rather than labia. W/revision, should be able to turn high & see therapeutic effect. Still need to see gyno for PFD, have terrible pain w/orgasm. On Valium supps. Helps some. IC & PFD make sex painful, hopefully stim & gyno will help.
    Previous meds: Urised= off market, Elmiron= caused gastro problems. OAB meds= retention. Hyoscomine- not help. Azo= makes worse.
    Current meds: Elival 50 mgs at night, helps w/nocturia. Loratab=pain Prozac= anxiety. Zocor=cholesterol, Fioricet= Migraines. Zantac=acid reflux. Trazadone=insomnia. Zofran&Phenergan=nausea. Atarax =pain relief. Diflucan=yeast infections.
    Supplements=Magnesium=migraines, Marshmallow root, not sure helping or not, but not hurting anything. Enzymes= digestion. Melatonin=insomnia. Stool softeners & Miralax =constipation.
    Acidophilius =gut. Gas pills. Bio-freeze=muscles. Prelief= bladder
    Chewable vitamin. Tylenol=pain. Rarely ibuprofen= intolerant to nsaids .On elimination diet since Aug Not seen help w/bladder, but w/gut. Good effect w/diet is have lost 30 lbs.

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    • #3
      Yeah your about three hours away from me. I guess I'm more south Georgia. But I could always use someone to talk to. I was just diagnosed 8-24-12 so I'm new to all of this.

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      • #4
        Hi Boonky, i was dx in 2005. but have had symptoms that go back decades. They have recently took a turn for the worst, as before the symptoms were confined to frequency and urgency, not so much pain. Since the beginning of this year, i have had horrible pelvic pains and cramping on top of the ic, not sure all ic related or not. I do not have a uterus, but still have my ovaries and fallopian tubes left. Will see a new uro On Friday the 13th.(ooh thats sounds unlucky, ha ha). And i guess i will go from there and see what can be done to help with these new symptoms.
        Best wishes to a forming a support group where you are at.
        Dx 2005. Worsened w/preg in 94. Voiding 100 x. DMSO in 04= 7 weeks, worsened. Saw urogyno 05. Started heparin, kenalog lidocaine, helped a few hours. Referred to uro who implanted stim in 06. Trial great, w/99% improvement. Not seen same w/perm implant, leads were placed in rt. labia which caused me pain to set on therapeutic level. Leads were placed in butt w/trial stim, & not painful to turn up. Having revised 11-19, done while awake, so can ask where I feel pulses, so can be placed in butt rather than labia. W/revision, should be able to turn high & see therapeutic effect. Still need to see gyno for PFD, have terrible pain w/orgasm. On Valium supps. Helps some. IC & PFD make sex painful, hopefully stim & gyno will help.
        Previous meds: Urised= off market, Elmiron= caused gastro problems. OAB meds= retention. Hyoscomine- not help. Azo= makes worse.
        Current meds: Elival 50 mgs at night, helps w/nocturia. Loratab=pain Prozac= anxiety. Zocor=cholesterol, Fioricet= Migraines. Zantac=acid reflux. Trazadone=insomnia. Zofran&Phenergan=nausea. Atarax =pain relief. Diflucan=yeast infections.
        Supplements=Magnesium=migraines, Marshmallow root, not sure helping or not, but not hurting anything. Enzymes= digestion. Melatonin=insomnia. Stool softeners & Miralax =constipation.
        Acidophilius =gut. Gas pills. Bio-freeze=muscles. Prelief= bladder
        Chewable vitamin. Tylenol=pain. Rarely ibuprofen= intolerant to nsaids .On elimination diet since Aug Not seen help w/bladder, but w/gut. Good effect w/diet is have lost 30 lbs.

        Comment


        • #5
          Well I'm sorry to hear that it has gotten worse for you. I've always had the pelvic pain, prone to cysts on my ovaries. Not sure if my worsening pain is due to ic either. Is it important that we see a urologist? My ob diagnosed me. I hope that your new urologist can help you get some relief. I know how bad it can get. I'll keep you in my thoughts and prayers.

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          • #6
            Thanks boonky, you will be in my thoughts and prayers as well.
            I was dx by a urogynocologist, which i think was just as helpful as a urologist, i first saw a uro in 2004, and he tried me on all the current overactive bladder medicines, which all gave me retention. then came dmso instill which worsened my pain by far, so after the 7 week i stopped. He said he could not help me any further, so i eventually went in to see a uro gyno, which worked out well. i then was referred to another uro who implanted interstims, to see if would help with over active bladder symptoms, since i was going nearly 100x day including the night. The trial stim worked out great, but the permanent one implanted in 8-06, has never been like the trial one. So if you are getting the treatment from your ob that should be fine, unless you were going to get an interstim, you would have to see a uro who specializes in them.
            Dx 2005. Worsened w/preg in 94. Voiding 100 x. DMSO in 04= 7 weeks, worsened. Saw urogyno 05. Started heparin, kenalog lidocaine, helped a few hours. Referred to uro who implanted stim in 06. Trial great, w/99% improvement. Not seen same w/perm implant, leads were placed in rt. labia which caused me pain to set on therapeutic level. Leads were placed in butt w/trial stim, & not painful to turn up. Having revised 11-19, done while awake, so can ask where I feel pulses, so can be placed in butt rather than labia. W/revision, should be able to turn high & see therapeutic effect. Still need to see gyno for PFD, have terrible pain w/orgasm. On Valium supps. Helps some. IC & PFD make sex painful, hopefully stim & gyno will help.
            Previous meds: Urised= off market, Elmiron= caused gastro problems. OAB meds= retention. Hyoscomine- not help. Azo= makes worse.
            Current meds: Elival 50 mgs at night, helps w/nocturia. Loratab=pain Prozac= anxiety. Zocor=cholesterol, Fioricet= Migraines. Zantac=acid reflux. Trazadone=insomnia. Zofran&Phenergan=nausea. Atarax =pain relief. Diflucan=yeast infections.
            Supplements=Magnesium=migraines, Marshmallow root, not sure helping or not, but not hurting anything. Enzymes= digestion. Melatonin=insomnia. Stool softeners & Miralax =constipation.
            Acidophilius =gut. Gas pills. Bio-freeze=muscles. Prelief= bladder
            Chewable vitamin. Tylenol=pain. Rarely ibuprofen= intolerant to nsaids .On elimination diet since Aug Not seen help w/bladder, but w/gut. Good effect w/diet is have lost 30 lbs.

            Comment


            • #7
              Ok thanks! I can use all the information on ic I can get. I didn't even know it was a real thing until a couple weeks ago. My freguencies not too bad on a bad day I can pee maybe 3 to 5 times an hour. I just have problems with feeling dehydrated all the time. Don't know if that's a symptom of ic or if it's something else.

              Comment


              • #8
                I have the dehydrated feeling as well, but can be due to medications i am on, like the atarax and elival, and trazadone for sleeping. i always have a large cup of ice water near me to keep hydrated.
                Dx 2005. Worsened w/preg in 94. Voiding 100 x. DMSO in 04= 7 weeks, worsened. Saw urogyno 05. Started heparin, kenalog lidocaine, helped a few hours. Referred to uro who implanted stim in 06. Trial great, w/99% improvement. Not seen same w/perm implant, leads were placed in rt. labia which caused me pain to set on therapeutic level. Leads were placed in butt w/trial stim, & not painful to turn up. Having revised 11-19, done while awake, so can ask where I feel pulses, so can be placed in butt rather than labia. W/revision, should be able to turn high & see therapeutic effect. Still need to see gyno for PFD, have terrible pain w/orgasm. On Valium supps. Helps some. IC & PFD make sex painful, hopefully stim & gyno will help.
                Previous meds: Urised= off market, Elmiron= caused gastro problems. OAB meds= retention. Hyoscomine- not help. Azo= makes worse.
                Current meds: Elival 50 mgs at night, helps w/nocturia. Loratab=pain Prozac= anxiety. Zocor=cholesterol, Fioricet= Migraines. Zantac=acid reflux. Trazadone=insomnia. Zofran&Phenergan=nausea. Atarax =pain relief. Diflucan=yeast infections.
                Supplements=Magnesium=migraines, Marshmallow root, not sure helping or not, but not hurting anything. Enzymes= digestion. Melatonin=insomnia. Stool softeners & Miralax =constipation.
                Acidophilius =gut. Gas pills. Bio-freeze=muscles. Prelief= bladder
                Chewable vitamin. Tylenol=pain. Rarely ibuprofen= intolerant to nsaids .On elimination diet since Aug Not seen help w/bladder, but w/gut. Good effect w/diet is have lost 30 lbs.

                Comment

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