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New to this forum but not new to IC

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  • New to this forum but not new to IC

    Here's my story...I was diagnosed with IC in January of 2010 and suffered with it for 3 months then it went away for 9 months and reared its ugly head again this past December. I had bladder instillations with the first onset, tried Elmiron, herbs, acupuncture. The instillations made it worse, leaving me with repeated UTI's. I stopped the Elmiron-I was afraid to continue with it. I changed my diet which was pretty good most of my life, to eat only organic and natural foods. Whatever I did worked. Also, the very same month I had my first symptoms in January of 2010, I had a major breakup with my fiance'. I got rid of him and felt better! Then again, last December, when the second onset appeared, I had some emotional issues again. I definitely see a connection. My Urologist does not think I have IC but my gynocologist whom sees a lot of patients for this thinks I do. I do not have urgency although if I wait too long, I definitely leak. This could be my age as well and with the onset of menopause, maybe that's a normal thing.

    My history: Uteran fibroid causing partial hysterectomy in 2005. I've had two children previously. Lots of bacterial, yeast and bladder infections over the years and lots of antibiotics. 5 months before the first onset of IC, I had A MAJOR UTI that caused me to go to urgent care. I am not currently on any medications and have not had any infections since December, right before the IC flared up again. The only problems with sex is if I'm not careful about peeing afterwards, I end up with a UTI. Currently I am am not sexually active because I am so consumed with this discomfort that I have no interest. I am single so it's okay for now. I feel very alone (I have no family here, just my children, 16 and 14 and I don't want to scare themwith my health issues). Last year I had an abdominal hernia, causing major repair surgery and putting me on disability. During this time, my IC was gone. When I woke from the hernia surgery my right hand was numb and remains numb today. The neurologist says it's post surgical neuropathy and should go away in time. It's been almost a year without improvement. Sometimes my feet fall asleep or when I'm walking they seem numb intermittently. I'm experiencing pain in my left shoulder and arm, sometimes so bad I can't lift my arm over my head. My doctor said it's not fibromyalgia because I don't have fatigue and other symptoms and that if I get my bladder issues under control, most likely the arm pain will go away. Gee, thanks. I'm having a bladder scope done on the 30th, perhaps we will have some answers but something tells me it will be a waste of money (I'm on disability without insurance and it will cost me $400). But there is the chance there is something there, so it's a prudent thing to do. My symptoms besides arm pain is a burning vagina off an on, today it's very on, anal discomfort, especially after a bowel movement, then my bladder flares up. I feel like I can feel my anus, vagina and bladder all the time-they just don't feel right. My last urinalysis in January at the urologist came back negative (although he didn't send to the lab, just checked in the office). My new gynocologist also checked my urine a few days later, it was also negative. I did have a yeast infection and was treated for that successfully...I think.

    I tried chinese and asian herbs through a holistic healer and my acupuncturist. I see my acupuncturist 3 days a weeks. My energy is good but I now have to scale back because of the expense. She thinks it's emotional but I'm not really so emotional, have little drama in my life (except worrying about not working). I began meditating a month ago and do so almost every day for 30 minutes. I'm really trying to beat this, or at least make living with it manageable. My laundry soap changed over a year ago and I wear white cotton underwear. My thongs I wear are loose.

    I've been reading "Along the Healing Path" Recovering from Intersistial Cystitis by Catherine ******. Very insightful book. Marshmallow tea does not work for me, chamomile is better. I've tried a lot of the roots she mentions, by brewing into a tea but they don't work. I plan to get tested for allergies-I think this is very big for me. I do not have mercury in my mouth which is a relief. I live in San Diego-does anyone know a place to get tested for allergies?

    The latest thing that happened and the thing that caused me to write this to all of you in search of help, is that last Wednesday, I decided to eliminate most everything from my diet because I realized I was eating no no foods: avocados, apples, bread, yogurt, coconut, dried fruit, and almonds, almond milk and almond butter! I thought I was being smart with that diet for my overall health but come to find out they could be causing an allergic reaction, producing histamines, causing my bladder to flare. So, for 4 days, I juiced the following: carrots, kale, broccoli, apples, blueberries, peaches, parsley, mint, fennel, green beans. I felt pretty good the first two days with just carrots and broccoli and protein powder. ABSOLUTELY NO SYMPTOMS for two days! I felt like a new person. I had not washed my hair in 2 weeks (I'm not joking), went to a birthday party where I ate avocados and cucumbers that I brought and overall looked better. I went home, ate another avocado and had juice with green beans and beets. I alos ate popcorn. A few hours later I was in pain and it hasn't stopped since. Researching on the internet yesterday, I discovered many of the things I've been juicing are oxates and also a no no because they are histamine causing and also could be allergy reactive. Beets, green beans, kale, parsley, corn, coconut and lots of others. I thought I would eat chicken because I'm worried about not getting enough to eat and what did I find out? Chicken with it's natural hormones are also a no no. While walking yesterday near my home, my nose ran and I had a sinus headache. I have never had allergies but now even a sweater causes a rash. I'm also itchy all over at times and other times no itching. At midnight last night I was so hungry that I ate boiled plain quionia which i'm not sure if it hurt or helped. I haven't eaten anything yet today and it's 10 am...I freaking out now, do I eat carrots and protein powder only? I bought 25 pounds of carrots yesterday and the cashier asked if I had a horse! lol. I itook a Benadryl last night, scraping the coating off, fearing the artificial dye would hurt me. My head cleared up but did nothing for my bladder. I have tried an assortment of natural things like Quecertin, colostrum, chamomile tinctures, calm waters tincture, lots of roots: couchgrass, cornsilk, catnip, licorice and marshallow.

    I have gotten rid of all cleaning supplies and replaced with chemical free. Then realized the vegetable spray I bought is made from orange and citrus oil! Duh! What can I use besides water? I buy only organic and am planting more vegetables with my herbs this year.

    The biggest fear I have is that I may have mold under my house. The onset of my IC came right after rain season where my house smelled mildewey for a few weeks. Then my IC in December flared up again right after rain season. I don't know if it's connected or not.

    So, this is my story. What do you think? Is it IC or something else? Today I'm going back to carrots and broccoli with my protein powder and lots of water in between. I'll let you all know if there are any changes. If I went 2 days SYMPTOM FREE, there must be a connection to my diet and perhaps I don't have IC, maybe just an intolerance to certain foods?

    My prayers and beautiful thoughts have been sent to all of you ever time I read posts with stories I can sometimes relate to.

    Thank you!

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