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His ladies
My main IC complaint is that, after I urinate, my entire vulva burns for up to three hours. This is dependent on food, if I only ate salmon, lettuce and cucumber the pain would be much lower but Boaz has told me I'm not allowed to do this. I'm not really sure what to refer to this as, as it's sort of both IC and vulvodynia rolled into one. Has anyone else got this symptom? I used to have more burning during urination but this is much worse.
Katie
Hi Katie, I used to have this
Hi Katie, I used to have this, not all the time but often. i found it helped to stay very consistently hydrated. it was worsened by eating, too, so I got pretty thing. I totally hear you. It'll occassionally happen to me but it is very rare now, and I'd say it decreased during the first year of treatment and really improved between year 1 and 2. I found that it gradually decreased in intensity, length and frequency. Sorry you're struggling with it but please know it can improve.
Thank you Claire that's
Thank you Claire that's really helpful. Did you have a lot of food intolerances in treatment? I seem to be just about intolerant to eating itself!
I've been in treatment a long
I've been in treatment a long time now (4.5 years) and it has been a real rollercoaster ride. I improved steadily but slowly for 2.5 years, was eating off list 4 and then hit a huge bump in the road, probably an infection, followed by prolonged inflammation. Then I dropped back to only tolerating about 5 things on list 1. At this point, I don't eat any grains/starches and am eating some things on list 4 right now. But I'd say I steadily eat off list 3, though not everything on the list.
It's very tricky to find the right balance. I still struggle with it and when I get very symptomatic, my inclination is to limit the foods I eat. Don't know if that's a good response or not, but it sometimes becomes a way to try and help the situation. So I totally get it.
Good luck and stay hydrated! I wish I had more helpful tips. I guess to make sure whatever water you're drinking really agrees with you.