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what I learned from Drs 6&7

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  • what I learned from Drs 6&7

    I posted earlier thinking I had vulvodynia but spent several weeks dealing with 2i nternists who thought yeast 3 gynecologists who wanted to treat a skin condition. Finally, after finding some relief with the low oxalate diet, I got back to the Pelvic Pain Clinic at UNC-Chapel Hill where I live. I was to see a fellow -- basically a doctor who is learning her specialty. I carefully wrote out the history and treatments I'd had since March, plus information about two bouts with IC, migraines and burning mouth syndrome. The young doctor listened and read and asked if I would mind waiting until her boss, the "guru on this" could work me in. Of course I said I'd skip a work meeting and wait. Eventually they came in together and started with my mouth, then a pain trigger point exam over all my body and finally and detailed and sensitive female exam. Dr. Denniz Zolnoun, the guru, had clearly read my long chart at UNC that included years with the headache clinic and urogynecology. She said "I think we can fix you up! Be patient and we're going to go gently because of your highly sensitive reactions to pain. You have a pain problem not a skin disorder." They took me off the steroid ointment I was using, Triam cinolone, which had followed 5 weeks of Clobetasol and have started me on Lamactil, an anti-seizure drug like Lyrica, etc. I must add it slowly and she said results would be slow. She also recommended a vitamin E cream to order from the internet "genes e cream or somesuch. They say the low oxalate diet is clinically unproven, which I knew, but that it was okay to follow it and to keep a food diary. so I've added that in. My advice to all is to look for a "pelvic pain" specialist if you can and to be persistent and organized in describing what's wrong. I mean I cried but I also have seen all the doctors since April and feel finally on track. So don't give up hope. I haven't.
    Fletcher

  • #2
    Yes, that IS great news! Please keep us posted on the progress you make on lamictal!
    Sorry to get personal, but do you have the type you can see--with inflammation, etc. or the nerve pain type?

    Thanks in advance

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    • #3
      New doctors think it's nerve pain. They called it somatosensory pain, for which I've yet to find a definition I can understand I'll explore this on my follow up visit. A second issue I have is tingling/prickling of my legs -- especially between my thighs. does anyone else suffer from this? It's far more tolerable than the burning but still annoying. And I'm getting heartburn in spite of large dose of Nexium so I'll probably have to give up coffee.
      Fletcher

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      • #4
        lidocaine thanks

        Thanks for the lidocaine tip. I just got a callback from the nurse who asked my docs if I could have lidocaine for emergencies. She called in a prescription for me so thanks for the tip. I sure hope I don't have to use it as I'm driving four hours on Monday to a professional meeting that will involve lots of sitting....On the whole I'm comfortable except for the tingling/prickling. time for a walk around the office which reduces the sensation.
        Fletcher

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        • #5
          I was given the steroid cream Triamcylone or something spelled that way. It didn't help. I recently asked my uro for a prescription of Xylocaine topical gel the one he used when he did my DMSO instills and cystoscopy. I recently went to a gyno and told her of my symptoms thinking I had VV. She didn't see any redness, irritation or swelling and said I looked pretty clean. She did do some swabs to send to the lab.

          Is there a test to diagnose VV or it is when all other gyno problems have been ruled out? Is a pain specialist different from a gyno?
          bunnykinb

          6/04 dx Mild IC; 3/06 2nd hydro/cysto w/2nd uro; Moderate IC now. IBS dx 11/03. 6/08 dx Vulva Vestibulitis/Pelvic Floor Spasms. 7/20/15 Feels like I have moderate IC now. Burning again.

          tried & failed treatments: Urocit K 2x/day, Prelief & Atarax 25 mg 3/05-6/06; elavil 10mg 11/30/06-2/28/07 (stopped due to hunger); elmiron orally but had throat tightness;heparin instills 1x/mo 9/04-2/05;elmiron instills every 2 wks 7/05-2/06;20 DMSO 7/28/06-9/07.nortriptyline 10mg 4/07-10/07current meds/treatments:Tofrinal 25mg;Yasmin bc. Heparin instills every 2 weeks 2/08-present. Mix: 8cc lidocaine, 8cc heparin (40,000 units), & 3cc sodium bicarb. main symptoms: frequency & labia/clitorial burning

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          • #6
            Oh, on the lidocaine patches. Duh, but where are the patches applied?
            bunnykinb

            6/04 dx Mild IC; 3/06 2nd hydro/cysto w/2nd uro; Moderate IC now. IBS dx 11/03. 6/08 dx Vulva Vestibulitis/Pelvic Floor Spasms. 7/20/15 Feels like I have moderate IC now. Burning again.

            tried & failed treatments: Urocit K 2x/day, Prelief & Atarax 25 mg 3/05-6/06; elavil 10mg 11/30/06-2/28/07 (stopped due to hunger); elmiron orally but had throat tightness;heparin instills 1x/mo 9/04-2/05;elmiron instills every 2 wks 7/05-2/06;20 DMSO 7/28/06-9/07.nortriptyline 10mg 4/07-10/07current meds/treatments:Tofrinal 25mg;Yasmin bc. Heparin instills every 2 weeks 2/08-present. Mix: 8cc lidocaine, 8cc heparin (40,000 units), & 3cc sodium bicarb. main symptoms: frequency & labia/clitorial burning

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            • #7
              I had burning or irritate feeling there for weeks, then the day I see the gyno, it doesn't hurt. Then the next day it is hurting again and has been since. Ugh. I go back again for a follow appointment on 6/29/07.
              bunnykinb

              6/04 dx Mild IC; 3/06 2nd hydro/cysto w/2nd uro; Moderate IC now. IBS dx 11/03. 6/08 dx Vulva Vestibulitis/Pelvic Floor Spasms. 7/20/15 Feels like I have moderate IC now. Burning again.

              tried & failed treatments: Urocit K 2x/day, Prelief & Atarax 25 mg 3/05-6/06; elavil 10mg 11/30/06-2/28/07 (stopped due to hunger); elmiron orally but had throat tightness;heparin instills 1x/mo 9/04-2/05;elmiron instills every 2 wks 7/05-2/06;20 DMSO 7/28/06-9/07.nortriptyline 10mg 4/07-10/07current meds/treatments:Tofrinal 25mg;Yasmin bc. Heparin instills every 2 weeks 2/08-present. Mix: 8cc lidocaine, 8cc heparin (40,000 units), & 3cc sodium bicarb. main symptoms: frequency & labia/clitorial burning

              Comment


              • #8
                LIDOCAINE GEL DOSEN'T WORKS FOR ME BECAUSE WHEN I APPLY IT TO MY PUBIC AREA,IT GET ABSORB BY MY BOWEL IRRITATED IN THE AREA.

                CREAMS DOSEN'T SEEMS TO WORKS FOR ME.I GET TOO MUCH MOISTURE FROM THEM AND MY LOWER SIGMOID HATE IT.MOISTURE IS ALREADY A PROBLEM IF YOU KNOW WHAT I MEAN.

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                • #9
                  I'm still confused on how the lidocaine patches area applied. The sticky side of the patch has the lidocaine on it, right?
                  bunnykinb

                  6/04 dx Mild IC; 3/06 2nd hydro/cysto w/2nd uro; Moderate IC now. IBS dx 11/03. 6/08 dx Vulva Vestibulitis/Pelvic Floor Spasms. 7/20/15 Feels like I have moderate IC now. Burning again.

                  tried & failed treatments: Urocit K 2x/day, Prelief & Atarax 25 mg 3/05-6/06; elavil 10mg 11/30/06-2/28/07 (stopped due to hunger); elmiron orally but had throat tightness;heparin instills 1x/mo 9/04-2/05;elmiron instills every 2 wks 7/05-2/06;20 DMSO 7/28/06-9/07.nortriptyline 10mg 4/07-10/07current meds/treatments:Tofrinal 25mg;Yasmin bc. Heparin instills every 2 weeks 2/08-present. Mix: 8cc lidocaine, 8cc heparin (40,000 units), & 3cc sodium bicarb. main symptoms: frequency & labia/clitorial burning

                  Comment


                  • #10
                    After the patch is applied to the undies, will the other side of the patch that is non sticky allow the lidocaine to provide relief? I used icey/hot patches when I had pelvic pain. The sticky side was placed on my skin pelvic region. It was the sticky side that let out the icey/hot stuff not the other side. I guess that is why I am confused.
                    bunnykinb

                    6/04 dx Mild IC; 3/06 2nd hydro/cysto w/2nd uro; Moderate IC now. IBS dx 11/03. 6/08 dx Vulva Vestibulitis/Pelvic Floor Spasms. 7/20/15 Feels like I have moderate IC now. Burning again.

                    tried & failed treatments: Urocit K 2x/day, Prelief & Atarax 25 mg 3/05-6/06; elavil 10mg 11/30/06-2/28/07 (stopped due to hunger); elmiron orally but had throat tightness;heparin instills 1x/mo 9/04-2/05;elmiron instills every 2 wks 7/05-2/06;20 DMSO 7/28/06-9/07.nortriptyline 10mg 4/07-10/07current meds/treatments:Tofrinal 25mg;Yasmin bc. Heparin instills every 2 weeks 2/08-present. Mix: 8cc lidocaine, 8cc heparin (40,000 units), & 3cc sodium bicarb. main symptoms: frequency & labia/clitorial burning

                    Comment

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