Lovelife...just reading about your condition makes me hurt. I can't even imagine the pain you're in or the fear that goes with it. I will definitely be keeping you in my prayers.

bel...thanks for staring this topic.

I've been searching the internet trying to find out more about vaginal RSD. I'm sooo hoping I don't have that, and that the burning, scraping pain there is truly a bladder issue or low estrogen issue as my GYN doc thinks...I go see him the 2nd for the low estrogen issue. I had a hysterectomy almost 6 years ago (pre-RSD), but my doc left 1 ovary hoping to keep estrogen production. A year ago yesterday (post-RSD) the other ovary had to be removed. My doc knew about the RSD and my concern that the surgery could cause spread (RSD started in left wrist/hand in 2006), but it was necessary to remove the ovary. I had some incision bleeding issues in the first few weeks from the belly button incision which had to be repacked daily to stop the bleeding, and blood pooled in the abdominal area (but not considered internal bleeding)...are was dark burgandy and purple, almost black. I knew RSD had spread to the abdominal area, but was in denial for a long time. Also, I still have a lot of pain inside, as if the bad stuff wasn't removed...could be scar tissue. But the burning vaginal pain that feels like coarse sandpaper scraping across an open sunburn is not fun. Urinating isn't always painful, but wiping usually is, washing usually is, sex always is (my poor hubby). The thing that's difficult is that it could be low estrogen, bladder leakage, RSD, or all of those combined. Any thought? Anyone else have those symptoms?