Seriously spiraling. Would appreciate thoughts
Hey everyone. I was diagnosed in October 2025 with vestibulodynia by my doctor, Karen Toubi. Off the bat, she didn’t think I had hormonally mediated vestibulodynia. I was on birth control for only 6 months (from April-October 2025), and I had pain at the entrance for as long as I could remember (at least since 14 y/o). Additionally, my vulva did not look consistent with someone who has hormonally mediated vestibulodynia.
During my October appt, I had pain throughout the entire vestibule. She performed the VAT test and I didn’t have any pain after she put the numbing cream.
She treated me conservatively nonetheless. She had me on a compound cream (E/T, ketotifen, and gabapentin) for 4 months, while also getting Botox in the pelvic floor twice, and working with a PFPT for several months. After all of those treatments, I went to her a few weeks ago, and I still had pain pretty much around the clock (except at the 12 o’clock). She officially diagnosed me with neuroproliferative vestibulodynia and scheduled me for surgery in September. She said she felt really confident that’s what I have, and confident that I’m a good candidate.
Today, I also went to Dr. Alyssa Yee, which has now caused me to full spiral. I had scheduled an appointment with her last December when I wasn’t sure which doctor I wanted to see, and I didn’t want to waste an appointment that took like 8 months to get. Dr. Yee performed the Q-tip test, and I only had pain between the 2-5 and 11-7 o’clock areas. Meaning, my 12 and 6o’clock were pain free. I’ve never experienced no pain at the 6’oclock region before, and this was like the 5th Q-tip test that’s been performed on me.
So, Dr. Yee said that my test was inconsistent with neuroprolifterative vestibulodynia, and she wants me to start on an E/T cream. She said that I likely wasn’t getting the cream inside deep enough when I was applying it for those 4 months, even though, Dr. Toubi saw how I was applying it and said that, even though it wasn’t fully deep enough, it was deep enough to lessen my vestibular pain, which it hadn’t.
Now I have no idea what I have. I almost feel like I’m making up this pain, and that I don’t have vestibulodynia in the first place. Because how the heck did my pain change between 3 weeks?? And I wasn’t using any treatments during those 3 weeks. I’m getting different advice from different doctors and I really don’t know who to believe. And I was FINALLY diagnosed, and had accepted that i was going to get surgery, only to start all over again. I’ve never hit such a low point in this journey.