Vulvodynia my whole life & Vestibulectomy results

Greetings from upstate NY...

I feel like an expert on the subject of Vulvodynia. So much so, that I have had doctors admit to me that I know more about it than them. I'm sure a lot of you have seen this. So little is know about this in the medical world that it can become very frustrating to find answers.

I'm 30 years old. Ever since I lost my virginity at the age of 17, I have had vaginal pain. I thought maybe the first time was supposed to hurt, but when it continued hurting, I knew something was wrong. I saw endless amounts of doctors. I had endless amounts of failed relationships, heartbreak, men leaving me, ridiculing me, and feelings of no self worth. I tried every solution in the book...physical therapy, antidepressants, estrogen, lidocaine, amitryptiline, home remedies, biofeedback, pelvic floor exercises, dilators, botox, gabapentin...I could go on and on. No one could figure out what caused this, as everything physically looked fine. I developed severe depression and anxiety and was eventually diagnosed with Bipolar II disorder. I would be in a state of depression but would then lash out at people and experience extreme anger when something would trigger my sexual frustration. I learned to hate all things sexual. Even hugging or kissing would lead to feelings of fear, because those things could lead to sex.

Sex felt like someone was pouring acid into a cut and rubbing it in with their hand. For years I would let men have sex with me because they either made me feel like it was owed to them, that I was being a horrible person for withholding it, or I'd just have fear of them leaving me. I'd bite my lip and hold back the tears as much as I could while they were thrusting into me and I was in horrifying amounts of pain. I'd go to the bathroom afterwards and collapse on the floor in pain while sobbing. I wondered why I put myself through that, and why men continued to be ok with having sex with someone who obviously wasn't enjoying it. I had plenty of people tell me it was all in my head, or that I just hadn't been with the right person. Surely if I had sex with them, it would be enjoyable. It never was. It still never is. I have never experienced pleasurable sex, or even neutral, non-painful sex. I have no idea what it's like.

Last year I had a breakthrough in treatment prospects. I saw the right combination of doctors who specialized in vulvar pain disorders. This February I had a full vestibulectomy. I have not had intercourse since the surgery as I am still healing, but I have high hopes. When I touch the affected area now, I do not feel pain. I was used to feeling immense pain even when I lightly touched the area.

If this ends up working, I still have a long road ahead of me. I have post-traumatic stress from everything I've been through, and I have no sex drive, as I've learned to hate sex. I don't even like physical affection at all. I shy away from people touching me, and am very withdrawn in general.

I wanted to share my story so other women know that there are others out there who are struggling...and I am here to talk to you if you need someone. I know what it's like to feel so alone, as you can't talk about this with just anyone. Women learn to hide their sexual problems because society tells them to. I've been through it all...and chances are I can at least provide some advice, or just an ear to listen.

I have a blog that I have started recently on my post-op progess but am unable to post the link here. Message me if you would like to follow it.

Life is short, and every woman deserves the ability to enjoy physical pleasure...

Hello from Indianapolis!

I relate to your story so much. I have been dealing with vestibulitis since I lost my virginity at 18 years old. Like you I thought the pain was "normal" because everyone told me that the first time hurt. I have been told the same things by doctors such as, "It's in your head." "You just need to relax." I've let men have sex with me because I felt like I had no other option. Leaving me in pain and feeling used after every time.

I am now 23 years old and after 5 years of countless doctors, I found a specialist and traveled to DC for surgery. I am now 5 weeks post op from a full vestibulectomy. As I'm sure you can relate, it has been an emotional rollercoaster with good days and bad. My friends are great but they do not understand the emotional toll this takes on someone. Thank you for sharing your story. It helps to be able to talk to others who understand.