No announcement yet.

Back after long time

  • Filter
  • Time
  • Show
Clear All
new posts

  • Back after long time

    Hi name is Linda. I'm 48. I have just come off of about an 8-10 year remission. I am completely devastated and a nervous wreck. I really thought this thing was gone for good. I came down with IC in 1996 after attempting two inseminations to try and get pregnant. Obviously, I had gone off the birth control pill and wonder if hormones have more to do with this than anything else. Anyway...I had cystoscopy under anesthesia and was screaming in pain when I woke up. I have since never allowed anything invasive. The doctor said a lot of my inflammation was low in the bladder and my urethra was very inflamed. After many months of bad symptoms, they became manageable. I used Vicodin, Ultram, tried Elmiron, baking soda, ginger ale and then started to really watch out for preservatives in food like potassium sorbate and that other one that is dipotassium something or other. I had noticed that I had extreme symptoms after drinking a coffee with that fake creamer that had that in it. I stayed away from anything diet, fake and tried to eat more greens. Slowly, my symptoms abated. Then nothing...I was thrilled and little by little could eat anything I wanted. I even had an occasional regular Coke and started drinking a beer or two when I went out. This went on for years until just this past January. I had a couple of twinges in December, but they quickly disappeard. Then I made a sausage and red pepper dish and used a bottled Marinara that had wine in it-I did not realize it at the time. I'm not sure if this was the straw that broke the camel's back or not, but I ate it for 3 days as I had a lot of leftovers. I had also recently been in a hot tub-something I had never done. My pool does not bother me at all. I went back to my Uro that I saw for years and she would not prescribe pain meds-I was crushed. I ended up having to beg my primary. I need to use some pain medication or I cannot function. It is a burning, searing kind of pain. I am particularly saddened because I have a ten year old and had just started taking her to a lot of places and I also have a partner. The last time I was sick I was alone. I don't know how to deal with the depression and anger and continue to maintain a relationship. Anyway...I'm rambling...thanks for reading.

  • #2
    I can relate

    I understand your frustration totally. I thought I was in remission as well (read my tale of woe below, it is similar to yours). Anyway, I am back to having to watch anything I eat or drink...such a drag. I was eating and drinking just about anything with hardly a symptom for quite a while. It would be nice to know what makes things change so suddenly. It is depressing but I am going to get back to where I was. I hope you do too. Keep me posted on your progress.


    • #3
      What a bummer! Would go back to the diet and be real careful. 3 days of marinara sauce, so jealous...can almost taste it. Would just be super cautious with the diet and maybe it will calm back down and go away for another 8 years.