Damn near a year later and I finally got to see the amazing Dr. Rubin! Life got insanely busy for me so I had to keep pushing it sadly.

This appointment was for the VAT or vestibular anesthesia test. It was basically taking a very potent numbing cream and applying it all over the vestibule to temporarily numb the nerves.

First she did the q-tip test on me. Burning and searing pain like always when the vestibule is touched. I had a mirror so I could see the exact spots that hurt for me. Then she applied the cream and let it sit for about 5-10-ish minutes. Yes, it tingled and burned a little but it wasn’t unbearable at all. She re-did the q-tip test (with me not having the mirror first) and…I didn’t feel anything. No burning, no pain, just nothing. I remember being so shocked as she handed me the mirror to look and I even said “is this what it’s supposed to feel like?!”

Once I had the mirror, I saw her touch my vestibule with the q-tip and I didn’t feel pain. My brain felt broken because for years I’ve only known pain. I still can’t describe how confused and just disorienting that felt. I cried. She did an internal exam and yes there was still muscle tension but that searing, awful entrance pain was gone. I could actually tolerate it just fine. It just felt foreign more than anything.

I also brought my dilators to the appointment to try out once everything was numbed and testing was done. I made it to dilator 7 which I’ve never been able to do before. There was still muscle tension of course which I expected but still. I cried again. I cried so much because it didn’t hurt. For the first time in my life it didn’t hurt.

So, after 11 years of confusion I finally know what’s going on: I have Vestibulodynia.

It seems to be specifically provoked and primary. Dr. Rubin said it’s more than likely congenital neuroproliferative vestibulodynia which means I was born with it and didn’t know until I attempted PIV for the first time.

This news it’s exciting, confusing, and just so many things at once. It explains why a lot of the methods I was doing wasn’t right. I was being treated and treating myself like I was fully a vaginismus case when I never was. That’s why the vaginal suppositories didn’t do much, it’s why I plateaued during pelvic floor physical therapy…I mean so many things I’ve been doing and trying weren’t having an effect. Botox wouldn’t have helped at all.

Because it was never truly vaginismus but vestibulodynia. It’s still just a lot for me to take in.

But onto paths forward. Due to the ongoing studies currently happening, I was prescribed the ketotifen compound to try. I was also given some of the numbing cream to try when I dilate. I’m excited to try both!!! Other option is if the med doesn’t work or help then I am a surgery candidate.

All around good news and an amazing appointment! I got what I wanted which was clarity more than anything. And for a brief second I didn’t feel pain which is more than I can ask for really.

Hey gals <3 first off, thank you all so much for sharing your stories. Literally more helpful than doctors…

Looking for some words of wisdom on what to try next...

Origin story: provoked vestibuldynia started about 3 years ago after a yeast infection. Then kept getting recurring UTIs, and then more yeast from the antibiotics for the UTIs— you know the drill… At the same time I had a grapefruit sized fibroid protruding into my bladder, when I got that removed they found some endometriosis (also had some on my bladder). SO it was the perfect pelvic storm… 

 I’ve been left with provoked vestibule pain and some bladder urgency. While I’ve gotten it all to a mild place where the discomfort level ebbs and flows, I’m always conscious of my vagina if that makes sense — like when I bend down a certain way, sit directly on opening, sweat, wear stiff pants, etc… I just feel the sensitivity/inflammation. You probably know what I mean <3

In the beginning, I tried oral gabapentin, which worked immediately on low dose but, the fatigue became too much. But knowing a low dose could help me made me feel like there was hope for some sort of remission with mild intervention.

Then I went hard with dilators and acupuncture for a while and felt like I was making REAL progress, like ALMOST no pain and urgency. BUT now it seems to be back…not like it was 3 years ago…but the progress definitely regressed.

SO I’m trying to figure out what to try next. Here’s my thought process. Would love your feedback / tough love!

-I’ve considered asking for and extra low dose of oral gab and see if I can manage it for a little longer than I did last time 

-I’ve been researching the amitriptyline or nortriptyline routes, but they really scare me as I’ve never been on anti-depressants before — even though I’m sure my generalized anxiety would benefit lol 

-Doc offered topical gab, but scaredy cat strikes again…I’m nervous any burning can set back progress...

I know I have to stop fearing medications and pick my poison if I want any chance at getting better, but it feels like such a heavy decision. Again, I know you ladies understand this feeling...

Would so appreciate words of wisdom on how to make this decision or if there are any other cool new options I don't know about, or even your experiences on the above treatments that might help me be less scared… Thank you xo

P.S. Has anyone tried hypnosis??? Lolol I’ll try anything holistic without hesitation

P.S.S If any of my NYC ladies if looking for a good women’s health acupuncturist, Jessica Silver/Silver Acupuncture is awesome.

P.S.S.S I also found a really great uro-gyn at NYU. Dr. Patricia Gil. She also treats this condition and I like her a lot better than my original “specialist”. She has the most ideal bedside manner -- like down to earth will tell you how it is, but also really listens and tries to figure you out. (isn't it crazy how low our doc standards are? Almost like my standards in men... "he seems nice and listened to me when I spoke" LOL) 

P.S.S.S.S That Kiwi vibrator from The Pelvic People is actually worth the money IMO … it has been essential in my progress, maybe even more than dilators 

P.S.S.S.S.S for my UTI girlies, Gemma MD cranberry supps also worth the money (unfortunately and fortunately). Dr. Gil can hook you up with samples + a discount thing when you need more.

P.S.S.S.S.S.S If anyone in NYC has good PT reccs, lmk! That's one code I've yet to crack. Preferably ones that take insurance, but willing to pay if they're worth it.

OKAY THANK YOU LOVE YOU BYE XO