My vulvodynia started in October 2006, shortly after I started dating a guy I really liked. He was a Recently Divorced Mexican Neurologist (RDMN). We managed a few rounds of sex before he dumped me.
Those first few times having sex with vulvodynia felt like having sex with a really full, really painful bladder. I tried it despite the pain because I wasn't yet convinced that I had a problem. I thought it was a bladder infection, a weird one that the antibiotics couldn't take care of. I told RDMN about it after a couple tries, and he was considerate. We did alternative things, but any kind of bumping in my pelvic region -- especially on the front, on my bladder -- distracted me from our efforts.
It took me a while to even think about having sex with another guy after RDMN. My sex drive took a jump off a cliff, anyway: I went from hoohaing (I don't use the other word because I feel like it would be extra spammy) at least every other day to maybe once a month, and every time I did, my clit felt like it had needles stuck in it the whole next day. But I still tried it once in a while because once in a while, I still got horny enough that I cared to try.
About seven months after my vulvodynia started and shortly after I got my diagnosis, I bumped into a Cute Smiley Buddha-Shaped Guy (CSBSG). He had just had his last day of work at my old workplace, and I met him at his celebratory happy hour, a few days before he moved out of town.
The first night, I deferred: I told him I couldn't have sex with him because it would hurt too bad. But the next day I thought about it, and I got curious. What would my pain be like? Would it be better than with RDMN, or had it gotten worse? Plus, my sex drive was whimpering at me for revival. I figured I'd give it a shot.
At penetration, my vulva felt like -- you know when you get a really bad sunburn, how bad it hurts to move your skin at all? That's what it felt like. It took my breath away.
But as we went, the pain subsided. We were able to change positions and try it a couple times. I didn't have much bodily pleasure, but I made it through, and afterwards I was glad I had experimented. I knew that I could have sex, physically, that though it hurt extremely bad, I was still in some way intact.
I want to pause here to expand on this point. During the eight or so months it took me to get my vulvodynia diagnosis, I felt like something was eating me alive. Vulvodynia feels like your body is destroying itself. It is sharp, stabby, and burning, and it happens in an area with a lot of stuff that you want to protect. Finally getting a diagnosis and then having sex helped me understand that vulvodynia is not a progressive disease, at least not in the sense that it was consuming me in some mysterious way.
Others have written about feeling "broken." I understand that sentiment. It exists on so many levels: broken emotionally and spiritually, broken expectations, broken faith in life, broken sense of youth -- and yes, broken physically. But for me, knowing that I maintained a sameness, a continuity with the past, helped me move forward with what I had left.
Back to the story: the day after I had sex with CSBSG, the pain woke me up, raging. It hurt so bad all I could do was sit on the couch in awe. I may have tried ice; I knew by then that I didn't have many other options. And I didn't immediately connect the raging pain with having had sex -- I had seen my pain levels go up and down for no apparent reason, and since the sex had ended several hours prior, I figured this pain spike was unrelated. Only much later would I learn that a day-after-sex pain spike is standard for me.
It took me about half a year to try having sex again, this time with a far away high-school friend, in the midst of a rekindled crush. Crush was also very considerate -- and I can't say how much I've appreciated every guy who has taken my vulvodynia seriously. I know there are tons of losers out there.
Having sex with Crush was a repeat of the pain I had with CSBSG -- the awful start receding until the next day when it returned with a vengeance. I remember sort of cursing myself for trying to have sex again because, as with CSBSG, I got a urinary tract infection -- and it just hurt so damn bad that I didn't know why I had been so optimistic at the get-go.
But it's not like I had a ton of opportunity to have sex again. Crush lived six hours away and I remained more or less indifferent to whether I was having sex or not anyway. I was still hoohaing very infrequently, which, after years of an enthusiastic private and shared sex life, I found extremely disconcerting. I felt like the sexual part of me -- that part of my identity -- was escaping my grasp. I couldn't hold onto it. I was part dead.
It's amazing how wide sex is in our lives. We think it's a small, occasional engagement, and maybe also something lowbrow and secret. But sex to me included sensuality, experiencing all of life through the resonance of my body. As I've written before, vulvodynia was a finger on the string -- I didn't vibrate anymore.
I remained sexually dead for a long time. Eventually I worked around the pain in my head so I could hooha more frequently. I started using a vibrator -- through several layers of fabric! -- and that worked pretty well. When I finally killed that vibrator my AWESOME AWESOME AWESOME FRIEND WHOM I HAVE NEVER PROPERLY THANKED sent me a couple more. (She will be properly thanked...)
One is that Samantha one, the "massager." I can use that thing through my quilt!
I still felt stifled, though, and out of commission. Then, a little more than a year ago, an old college friend stopped by. She and I had had sex a couple times before, but this time, we made the sun come up. And she renewed me. I felt like I was celebrating sex again, and life, and I remembered that there are thousands of roads to a wholly satisfying sexual life. When you have a partner who respects your disease and is willing to be adventurous, willing to find what works for you both -- they save a part of you. They keep you from that robot, dead place. It's the same as being a friend to someone who's depressed or standing by someone recovering from addiction. We exist in components, and we have the power to save the suffering parts of each other.
Six months later, I tried penetration again, this time with a Random Guy I Knew. I was actually on the prowl, the first time in a long time. At the outset, I just wanted to wrap my body around RGIK in some abstract way -- I didn't want to have sex because I was still too scared. But RGIK was not one of the princes, or he was dumb, and it didn't click in his head what I meant when I said, "I can't have sex because it hurts."
As I held him off, I thought it over. I had changed my diet, done a little pelvic-floor therapy, come far in rebuilding my sexual self -- maybe I should give it all a test drive. So I acceded, and as soon as we started, he turned princely, checking in with me to make sure I was okay. The pain was again that splintery, sunburn feel at first, and then it got somewhat better. When we went for a second round, though, I had to stop him not because of my vulva but because something inside me -- my bladder? -- felt like it was going to pop.
I wrote about RGIK here.
It's only because of my college buddy and then RGIK that I entered into my current relationship at all, let alone with any expectation that I would feel sexual inside it. My relationship with Catfish has been the first stretch of my vulvodynia during which I've had regular sex, almost three years after my diagnosis.
At first, each penetration took my breath away, and I'd tell him to wait for a second to let the pain pass. And after several months of semi-regular sex, that sunburn feeling has become less of a hurdle. Honestly, I think it's less scary. I don't know whether the pain has backed off, but it definitely doesn't surprise me like it used to. I've developed a mental routine to deal with it -- I think around it, focusing on the way he feels and smells, listening to his rumbly voice. I look at sex through his eyes. He reminds me why it is enjoyable. I absorb his passion and make it my own.
The pain I feel during sex varies. Some days there isn't much; other days, it's a splintery dildo. Some days he hits something inside me and it hurts. Some days he hits my g-spot. If it hurts too much, I jump ship and we do other things. Some days I'm thankful that he can be quick ;)
It may sound like I'm continually submitting myself to a painful experience for the benefit of my boyfriend. There's a lot of talk in the pelvic-pain world about finding alternatives to penetration and not having penetrative sex if it's too painful. But what is too painful? I'm learning that pain is very much a mental game. Pain is not a structural malady -- in and of itself, it does not negate the existence of your vulva or your vagina. If we value having sex more than we value avoiding pain, we can literally "push through the pain" to make sex happen.
However, I am in no way advising anyone to push through the pain if they don't want to. Each person makes her own decision about what kind of sex works for her. I'm simply explaining why, after so many splintery romps, I continue to put up with the pain in order to have sex. I do it because having penetrative sex is a way for me to reclaim territory that vulvodynia has stolen from me. I bond with my boyfriend. I'm sexual in a way that I love. I focus on the parts of sex that still feel good, the times that he gets me just right, the smells and the intimacy.
I used to think I would never be able to have penetrative sex at all. Then I thought I could never have it regularly. I'm glad to have proven myself wrong. I feel like I leveled up in the mental game of vulvodynia.
But I'm not shaming anyone who has a different experience. First of all, I was lucky always to love sex and to be very enthusiastic about it. Not all women feel that way. Secondly, my triumph over my own vulvodynia can't compare to anyone else's story. We're all in completely different spheres. Just as our bodies are infinitely different, so are our experiences with them.
I do think it's important to remember the mental side of vulvodynia. Somewhere along the way, I stopped clinging to the fence of "can't." I chose sides. If I do not want to have sex, then I am choosing not to have sex: it's not that I'm forced not to have sex, but that, because of my pain or any other parameter, I'm deciding not to have sex. Saying "no" to sex because of pain can come from a place of power when we realize that we actually do have the ability to say "yes."
Vulvodynia makes us feel like we don't have control over our bodies or our lives. But any sense of power makes us feel more in control, which can help reduce our stress levels and our depressed thoughts. It may look like semantics, but for me, saying "yes" and "no" instead of "can't" goes a long way towards helping me feel like I'm turning my life right-side up again.
