Vaginal / Burning Urine for 5 Months! Please help if you can?

Hi Everyone 🌸

I joined this page as for the last few months I have been suffering from chronic vulval issues. At first my gyno thought it was a yeast infection, prescribed me everything under the sun - from creams, suppositories for dryness, Diflucan once a week for 4 weeks, etc 

Then we thought it could be a UTI, but no infection came back in the urine tests.

When it didn't go away, we suspected it could be a puss-filled cyst (very small, as big as a small pee) under my clitoral hood - so he removed that and treated it. 

Then he suggested it could be an allergy and prescribed dermovate which actually made it flare up more. I then decided to stop everything completely and change doctors, and she ran all STI tests (though I’m married and we have done all our tests before) but as a precaution and they were all clear. 

She then suggested it could be related to gastro issues so now I’ve done a stool test and an extra urine test and blood tests. She told me to take vaginal probiotics Floraplus and what it did was calm the vagina and help me target exactly where the pain and burning is coming from (the urethra). She put me on a light, bland diet which in fact I feel helped me quite a bit. Its still burning while I urine so I’m going to a vulva specialist and then furthermore have an apt with a urologist specialist in case it could be inflammation in my urinary lining / tract that had continued to flare up from all the crap I was putting on my vagina and sugar and caffeine in take + medications and other things. 

It’s not lichen according to my gyno though i have yet to have a proper biopsy for that and he said it seems highly unlikely / impossible to be vulvodynia because I can easily be touched and poked and checked down there without any pain & while we don’t have sex as much, when my husband and I do, it actually feels good and actually helps ease the pain, and when I touch or massage down there (with cold water or masturbation), it feels so soothing like its been lubricated and flushed out almost unlike what vulvodynia would feel like.  Mind you, I barely touch it period but when and if I do, it feels like a relief.

Has anyone gone through this before and if so, have you been able to target anything else I might’ve missed? I do believe it’s purely urethral as my urine feels like it’s lava so I’m up taking my water and all that and going to start a 3 day antibiotic treatment (Macrobid) just in case (my GP prescribed it as the last step)… Might be IC though blood tests were all clear, and previous urine test was Ok.. Running another one now and waiting for the result. Also Dabbing after peeing with cold water on a tissue soothes me so much (I only use organic, hypoallergenic, natural toilet paper + detergent.) I've also changed my diet and taking supplements that I have read on threads on this website have been useful - but any advice and thoughts / similar stories? Just desperate to gain insight or support from anyone on this platform and whatever anyone can do to help would be really really appreciated! It's affected my life and confidence and relationship, and I've spent 100s of dollars just getting things and seeing doctors...

thank you in advance... x

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