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My story is long, so I am going to condense it as much as possible. I just turned 60 'years young'! I've reached out to a few boards for help/advice as I have suffered through self diagnosing my condition for about 5 months now - although I've been to urologists, gynecologist, urogynecologist, Nurse practioner specializing in Interstitial Cystitis, etc. 2 cystoscopies, 2 ER visits when burning started last November...I am circling back to my initial diagnosis back in November of 'severe' vaginal atropy. After 5 months and 4 rounds of antibiotics for ecoli UTI after cultures, I 'still' have burning (frequency is better after antibiotics, but few days after done that comes back sometimes-oxybutnin did nothing) I have been on premarin cream 3x week applied to urethra and 1/2 tube - small amount, inserted in vagina. All this time I thought burning was coming from urethra because pain was intense when tube was inserted into urethra for both cystoscopies. But now I am thinking the burning is actually coming from my vagina and not urethra because I inserted an icecube into the vagina and then I couldn't feel the burning! Is it possible that the premarin cream 3x a week isn't enough and I need the Estrogen ring or patch? Could I be burning still from the atrophy (they said it was very bad) and could the ecoli be coming from my vagina into my urine and showing positive at culutre (never positive in lab, only culture). The ecoli infection is antibiotic resistant - tried nitrofutonin, macbroid and sulpa trim...something ??? Urologist now wants me to take a low dose antibiotic every day and I hate to do that if this is all because of my vaginal atrophy. Sorry for rambling,just so frustrated! Does anyone have anything to share/help if they have had a similar experience. Nothing is helping the burning, except I live with a cold pack 24/7 - even sleep with one! Vagisil burned worse! Had all the tests for STD's yeast, etc. I've heard of vulvedonia (sp?)...not sure. Going back to Gynecologist on April 15th. Thank you so much!!
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