Hi all, this is my my experienced living with a rare sexual dysfunction.
It's called Congenital Neuroproliferative Provoked Vestibuledanyia.
I discovered it when I was 12 and couldn't insert a tampon-but I kept it a secret for 8 grueling years. Now...
Getting into Dr. Goldstein's office was a long, tedious process. It required the transfer of a whole lot of paperwork, a few phone conference calls, and so, so many blood tests. Finally, about two months after being referred, we had an appointment with him a month later in October.
On a Thursday night after work, my mom and I drove six hours in the evening to get to San Diego. I was in a bad place again, as my beloved dog Rex had passed away just days before unexpectedly and I was feeling extra depressed. When we got there that evening my mom was giddy with excitement, telling me she had a good feeling about this one. After our phone conferences, it sounded like Dr. Goldstein was sure I had something called neuroprolific vestibuledaniya, I just had to be officially diagnosed. I on the other hand, not wanting to be disappointed yet again, kept my hopes very low.
If I had known just how incredibly torturous this appointment was going to be, I would have never gone, so it's a damn good thing I wasn't prepared. I started by meeting with the physical therapist in the office, who hooked up the biofeedback to my butt cheeks like Dr. Sullivan had, and talked to me about various ways I could relax the muscles. I then went on to their sex therapist, who asked me questions such as "have you experienced sexual trauma in the past?" "How has this effected you in your personal life and relationships?" And son on. Then, I met with Dr. Goldstein and his partner, a urologist Dr. Rachel Bart. Here comes the part I will try my hardest to put into words.
In order to see if Dr. Goldstein's diagnosis was correct, they had to do a test. This included using a thick white paste that numbs whatever it touches pretty quickly. They thought my problem was in the vestibule, a section of tissue that is past my labia, but anchored to the beginning of my vagina. Here is a picture, if that helps.
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As I laid down on the table and spread my legs, I began to shake, I suddenly realized this was going to hurt. My mom sat behind me and watched a large flat screen that was anchored on a wall, a camera pointed to at my vulva and projected onto the television.
"Okay," Dr. Bart said, "here we go." A nursing assistant pulled my labia minora open wider than ever, and I gasped and immediately started crying. "It's okay." Dr. Bart said sympathetically patting my leg, then the real torture began. She started applying the paste to my vestibule and I literally couldn't help but to scream in agony. I knew I couldn't ask them to stop because it was part of the diagnosis, so I shook and cried and gasped and yelled involuntarily.
"We're barely touching you, it's okay," Dr. Goldstein said, at which point I got pretty pissed.
"It feels like you're tearing me in half!" I screeched, and that was a pretty accurate assessment, as the woman who was holding my labia open was doing it gently, but it definitely did not feel that way.
After about ten minutes of the worst pain of my life, suddenly I was totally numb and I watched the tv as they were able to stretch my vagina open and see inside. My pelvic muscles still hurt when they were touched, as I still suffered that secondary vaginismus, but the horrible, indescribable pain was gone.
"Well, there you have it," Dr. Goldstein said happily, "I think that's a pretty good sign that we know what's wrong and we know how to fix it." If I can convey to you how much pain I went through for this diagnosis I would. The only thing I can say that may resonate is that they sent me home with Percocet...just from getting examined. Once I wasn't numb anymore, for the next two days I was incredibly sore, and in so much pain that yes, I needed Percocet.
Congenital neuroproliferative provoked vestibuledaniya. It's a mouthful, so I'll try to break it down for you. Congenital, as in I was born with this condition. Neuroproliferative means I had too many nerves in my vestibule, and the number was ever increasing. Provoked-the pain comes when touched, and vestibuledaniya is general vestibule pain.
The first step to curing this, was to remove the vestibule. Removing this would mean that I would have to get part of my vagina reconstructed because of the hold it has on the vestibule, so needless to say it was going to be a pretty big surgery. It required six weeks of bedrest, and three months of no sexual activity as well as physical therapy when I had gotten further into the process of recovery.
More paperwork, more bloodwork, an insane amount of crying and anticipation, a cool $12,000 and a month later on November 10th 2016 I was back on the operating table in San Diego.
The first thing I remember waking up was a nurse feeding me ice chips, then vomiting like crazy. Apparently they had to give me more anesthesia than anticipated, so there was lots of vomiting. When I had to pee, a nursing aid helped me gingerly from the bed, to the toilet, and watched as I sat down like an old lady. I had 80 stitches holding my vagina together, and let me tell you, it was painful.
However, that pain was nothing compared to the recovery. Dr. Goldstein warned me that every day for the next 10 days the pain would get worse. And damn, he was right. JUST FYI THIS IS A LOT OF TMI FOR SOME PEOPLE. On day 6 (which happened to be my birthday) I started throwing up from the pain medication so I was on my own from day 6-8 with no medication, just ice packs and baths. Ice packs and baths helped some, but only temporarily. Not being able to keep down pain meds was death, I was in so much pain I couldn't even sit on the toilet because it stretched my labia too much which was knitted so tightly with stitches. I was also constipated but not allowed to push my bowels in fear of busting stitches, so I literally sat on the toilet and cried. And threw up. And cried. And threw up.
After about three weeks, the pain started to go down and I was able to walk a bit. Four weeks, I was having sporadic pain, and at the six week mark, I was finally back at work. I was sore after every day, but I was so happy to be back. If you have never been on bedrest before, let me just tell you that sitting in pain for six weeks is not fun, and there were even points where I regretted it to be completely honest. I mean, that was just me being irrational at the time, but oh man the pain...pain like that 24/7 will really get to you.
