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My Story

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  • My Story

    Hey everybody!

    My name's Sarah and I'm originally from Toronto, Canada. I first started this difficult journey 2 years ago when after 19 years of life and having no UTIs, it seemed I was having one every week and they were really awful. I had just come off of Effexor for anxiety and then it happened. It was really hard because I had just started another job working with all students and no one understood why I didn't want to go drinking or needed to go home to sleep after work. I went to the urgent clinic maybe 8 times (my mom and I joked that I have frequent flyer miles there). I was treated with your standard antibiotics, they kept switching them. For pain I was given pyridium and tylenol 3 which did very little. I finally asked my mom (a nurse) to come down with me to the hospital as an advocate because no one was listening to me and I was a student and didn't have a family doctor. Anyways, after a horrendous experience with another nurse who basically sassed me out for being teary during my examination and for bringing an advocate, I was sent to a new family doc who is awesome and put me on Vesicare for the time being, got referred to the urology clinic at KGH (which has 2 of the top IC docs so that's exciting) and while it took another 6 months to see the doc (not one of those top 2) and then another 6 months for him to take me seriously...I was FINALLY diagnosed and am now able to start treatment properly

    In the interim of waiting for doctors I found this site when I googled "misdiagnosed UTIs" and found the food lists and recipes and forums and it was so helpful so thank you for all of your awesomeness <3

    Today I'm on elmiron. The side effects scare me a little but I'm really excited to find something that helps as both vesicare and enablex didn't help me out. I also just completed biofeedback sessions which I found only mildly improved symptoms but it was kind of fun anyways. I'm looking forward to learning and growing with all of you and finally managing my IC