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Thread: mt vernon, wa ?
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10-26-2005, 04:56 PM #1ICN Member
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- Apr 2005
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mt vernon, wa ?
Hi Everyone! Just wondering if anyone has a good experience with a uro and/or pain clinic in or around your area? i would love to hear from you. It isn't for me but a good friend of mine lives there. She has IC much more severe then my possible IC (still in the diagnoses stage). She is seeing a new uro at virginia mason next week. Any support groups? any info woud be great. thanks!
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10-27-2005, 07:26 AM #2ICN Member
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- Feb 2005
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- Olympia, WA
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I don't live by there, I live further south, but I go to Seattle for my IC treatment. I have been to Virginia Mason, but I much prefer the Urogynegcology Clinic at the University of Washington. If she does not like Virginia Mason, tell her to try the UW. There are dismal urologists in WA....my experience! Some people are trying to start a support group, which would meet in Seattle. Purpleviolet here on the ICN can tell her all about the group, if she wants to attend.
30 year old Mother, Midwife, Birth Doula, Herbalist, and Massage Therapist with sudden onset of IC approx. 2/16/05 (after a PAP smear and routine gynecological exam). I tried a HUGE list of natural and alternative treatments (including Cystoprotek, Desert Harvest Aloe, Aloe gel, Glucosamine/Chondroitin, L-Argenine, Quercitin/Bromelain, Marshmallow Root...etc) for the first 9 months of having IC, without much relief, until I finally researched and started Elmiron.
My experience:
~Previously took Elmiron 100mg three times a day
(9/29/05-7/06)
~Experimented with dosage (1-2 Elmiron a day recapped into a plain gelcap) and did well with occasional mild flares. (7/06-9/09)
~Stopped all together at the 1 year mark (9/29/06) for 10 days. Still felt good, with low-level symptoms.
~Decided to go back on it (10/16/06) to see if another year on it will bring me into full (zero symptoms) remission. Currently taking 1-2 pills a day, recapped into a plain gelcap.
~ 6/08...Tried to go off Elmiron again, had huge flare at the 3 week mark, went back on 100mg once a day for maintenance.
-I went off Elmiron for 2 months due to pregnancy and had a complete relapse of IC symptoms to pre-diagnosis levels of pain/frequency. I then went back on Elmiron at 10-12 weeks, but was unable to take it further due to severe morning sickness. The 2nd/3rd trimesters were MUCH better IC-wise, and postpartum is the best I have felt in years. I am no longer on Elmiron for now.
-20 month postpartum remission from 4/17/09 to 12/10/10.
-Out of remission after a pap smear on 12/10/10. Pap smears are obviously the main IC trigger for me. Currently trying to cope with loss of the remission.
Also doing:
~Sugar-free/gluten free and strict IC diet (With an emphasis on organic, alkaline and whole foods)
~Prenatal DHA/Fish oil supplement
~Vitamin D supplement
~Culturelle probiotic
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10-27-2005, 02:14 PM #3ICN Member
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- Oct 2002
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- Seattle
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Hi charmedx3 - Yes, would love it if you could attend support group meeting in Seattle - see the the ICN calendar and post or e-mail if you can come. PV
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10-28-2005, 08:13 AM #4ICN Member
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Thanks for the info I will pass it on to her. I wish I could go to your support group but you are just too far for me. But I will let my friend know. May be next time I am in WA I will try to make it to the support group. Thanks!
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