15+ years in the making

I haven't updated in forever, but I receive and read your emails and hear your frustration and pain and I always try to respond. If I don't respond within a week or so please email me again. I've answered hundreds of your emails over the past few years and I promise not to stop. There is hope. Please don't give up. Please keep on trying. I had to try for 15 years but eventually I found a treatment that worked.

Here's my current update: I'm still pain free! I think the BOTOX really did it. Really cured it. The only medication or cream I take or use is gabapentin-- 300mg of gabapentin/day because I'm scared that if I quit it completely the pain will come back although there have been weeks at a time when I've gone off it and had no pain, so I am trying to taper off completely now.

I also finally, finally found the most amazing partner-- I think this is the light at the end of the tunnel that I'd been waiting, wishing, and hoping for. He's been the perfect man for me in this journey, which now includes this new life of sex without pain. I've discovered that sex with someone you love and without pain is so amazing. Besides just feeling good physically, it helps you feel so emotionally bonded and close to one another. It is a salve when there are other things going on that could cause tension in the relationship or even stressors that have nothing to do with the relationship. It can be so comforting or exciting or adventurous-- but it's all so good and the connection I feel is like no other I've felt, and sex is only one part of that. I'm really able to see and feel the emotional connection so much more than when I had pain with sex, but honestly a lot of it is related not just to pain-free sex, but to having the right partner to have pain-free sex with. I felt the deep connection before we had sex, and sex is what enhances it even more. I feel like my partner and I have an active, healthy sex life. 

I've been able to discuss my condition with him and I think he understands most of the trauma and background, but not quite all of how it has affected me mentally and emotionally, which is to be expected. I don't think anyone who hasn't been through this can understand how it pervades your entire being.

The part I still have trouble with is initiating affection because for so long I associated affection as something that led to sex, which was so painful... so I have to work on undoing those associations in my brain. A lot of the time I will be dying to jump up and give him a hug when he walks in the door or to put my hand on his back while he's standing at the sink or to reach over and grab his hand when he doesn't reach first, but I hold back and it's, like, I know what is happening and I want to overcome it, but I think it's going to take some time. I don't want to be reserved with regard to my affection toward my partner, because I have so much of it to give and I wish so much I could show it all to him. Luckily, we have talked about this and he is going to wait and help me while I work on this because I so badly wish I could show my affection without hesitation. 

Those pieces of my mindset/trauma where I was always afraid that affection would lead to sex have naturally carried over. There are times I want to initiate affection and I just can't and I get so frustrated with myself even though I know it's from the trauma; I want to blurt it out and tell him but then I tell myself that the time isn't right. I find some types of affection are easier for me than others-- it's really easy for me to go and cuddle on the couch with him-- I don't feel that irrational but totally ingrained fear in that situation, or if we are watching TV in bed it's also easier for me to show affection.

At night, even the nights when we don't have sex, if sometimes he falls asleep before I do I will tug on his shirt or gently grab his shoulder and he'll either automatically move toward me and know that I want him to hold me or sometimes before we fall asleep I even ask for him to hold me while we talk, even though him holding me is our default when we fall asleep at the same time. We sleep like spoons almost every night, usually the whole night, and I feel more comfortable asking for his affection in these moments when both of us are more vulnerable. I feel vulnerable and protected at the same time. In this space I know I can always say I'm not up for sex if I'm not and that the affection will still continue. I think this is helping to rewire the previous negative associations I have in my brain to positive associations.

Anyway, I never thought my life would be this good with regard to finding love and making such a deep, abiding connection due in part to being able to have pain-free sex. I dated a bunch of guys (but did not sleep with) before my partner and I didn't connect with any of them in the way I connected with my partner when I met him. The first time we had sex I was really scared because I did not know if it would hurt or not... the last time I had had sex was in 2009. It took me a couple months before I was mentally ready for sex, but my partner waited so patiently. He was so patient that sometimes I don't know why because I was so chaste and sometimes awkward and I think most men would leave if they knew it would take a couple months or more for sex to happen, but my partner waited for me and that's just one of the reasons why I know he's the right one for me. I would've waited for him, too, if the situation were reversed, so I guess that says something about our strong connection even before we had sex. 

I'm not on birth control because I'm so sensitive to the hormonal changes from it and there is evidence that birth control could cause vulvodynia. There's also risk of irritation from other chemical used in condoms so my doctor recommends the fertility awareness method if I'm exclusive with one partner and we are serious about one another, which I am and we are.

We broke up for a few weeks earlier this summer for reasons unrelated to sex but we only really broke up and didn't really talk for 2 weeks-- the other weeks we would mostly still sleep in the same bed and he would hold me, with sexual relations just sometimes. Being held without the expectation that there will be sex is such a warm, amazing feeling. It makes me feel so relaxed and loved. Being held after sex is also an amazing feeling. I don't have to run to get an ice pack anymore or apply lidocaine to stop the burning, searing pain. I can just relax into my partner's arms and fall asleep together. 

Before we officially reconciled he said he didn't want to get back together with me until he knew for sure that it was forever. So, I'm feeling lucky in love right now and have so much hope for our future. I held out hope for so many years that I would feel this kind of love, that I would find someone who is kind and could understand my background, understand me, someone who I feel deeply connected to and who feels deeply connected to me, someone who wants to make a family with me, somebody who loves me more than anything... so, so many years I spent hoping... and to be fair there were times when I lost that hope and Dr Vyas always reminded me of what I wanted in life and promised I would get there. I'm glad I never gave it up because I found this man who nurtures my soul, my mind, my heart, my body and I, too, nurture his soul, his mind, his heart, his body and more. He is my home and I am his. Sometimes I look at him when he isn't watching and I smile to myself at how fortunate I am to have found this love. Sometimes he catches me smiling and asks what I'm smiling about, but I don't tell him, even though I wish I could. That's the trauma component. On the other hand, I don't mean to be mushy, but I think our love is going to keep growing and growing beyond what either of us knows is possible. He's just that special (and so am I). 

I just want everyone reading this, everyone searching for hope, to know that I thought this would never happen for me, but it did! And it will happen for you. I'm going to get to have children and marriage and Dr Vyas will be there just like she said, even if I have to FaceTime her in for the birth of my and my partner's children.

In a way my vulvodynia past has opened up new ways for us both to be open with one another about sexual things related to each other or us together-- I think this openness and comfortableness in sharing things makes us closer, connects us, and helps bond us. 

We have gone on so many amazing trips and even one trip that was a trip of a lifetime and more like a honeymoon trip but even in some of the most mundane life moments I will find my heart skipping a beat and having to catch my breath or feeling butterflies in my stomach when I make eye contact with him. Or getting goosebumps when he smiles at me. It's such a sweet love and being able to have pain-free sex makes it all that much sweeter. I feel so lucky. Finally. 

My story finally got a happy ending and so will yours. Don't ever give up hope. I had to wait 15+ years for my ending and now a new, pain-free beginning, but it was worth it because I found the man who is most connected to me and I to him, and who I trust above all not to hurt me because he is kind, first and foremost. If you're in a relationship already, then I think kindness to one another while you go through this painful experience is paramount. Move closer to each other instead of distancing yourselves. Talk it through.

I know you're here reading this because you have hope, or you want to have hope-- hold onto that. I know it's hard sometimes but you must never let go of it. You will find a treatment that works even if it takes years. There's always something new coming around the bend. Just keep trying. And keep the hope close to your heart. (And go see Dr Vyas if you can get to the Houston area.)