Living with Vuvlodynia (pt1)
(Content warning for vaginal pain and graphic descriptions of vaginal pain)
I’m twenty-eight years old, I have vulvodynia, and I’m still happy.
I want to start there first, because so many stories online about vulvodynia are sad and hopeless. When I was first diagnosed nine years ago, I spent months on forums, finding heartbreaking stories again and again, to the point where I honestly believed that I would never be okay again.
If you’ve never heard the word before, vulvodynia is an umbrella term for chronic vulvar or vaginal pain that is not attributed to anything else (i.e. like an infection). From the Latin: vulvo- (related to the vulva) and dynia(pain). That’s me.
Right now my life with vulvodynia looks like this: I have fun, intimate sex with my partner, whom I connect with on an emotional and physical level. Sometimes we have vaginal sex, sometimes we have sex in other ways. I try to do vaginal dilation physiotherapy exercises once a week, but honestly I’ve been busy lately and I often don’t have time. If I forget or am busy, we can’t have vaginal sex. Usually I need to use numbing gel during dilations or during sex, but not always. I can’t really use tampons for more than a day or two on my period, or it gets too irritating or painful. I randomly get burning pain in my vagina, but not more than a few times per month. I use numbing gel to help with that too. I think I’m going to try to have kids. I’m a bit nervous about that because I don’t like having vaginal sex often, but it’s easier than other reproductive options. I have a fulfilling and busy life, and vulvodynia affects some of it but not all of it.
Now that you know there’s a happy end on this story, let’s go back to the sad parts.
I found out that I have vulvodynia when I was 19 years old. It was winter time, and my boyfriend and I had just come back from watching the first Hobbit movie in theatres with a group of friends. I remember being distracted the whole movie because I knew I was going to ask him to have sex afterwards. I couldn’t wait.
Soon, we were laughing and staring into each other’s eyes, taking our clothes off and touching. We really loved each other (and still do – we’re still together now). I remember him starting to enter me, and the brief thought of: “Hmm, maybe we’re doing this wrong.” Then – oh no. Oh NO.
It felt like someone was sticking a burning branch inside me. It felt like someone was trying to shove their way into my vagina with a knife. It felt someone was trying to split open my flesh in a way that was never eversupposed to happen. It really hurt.
I said, “Stop. Stop. This is not going to work.”
I’m pretty thankful that I had a good sense of self-worth, that my parents gave me good sex-ed books, that my partner was a good person. I was able to tell him to stop, and when I did, he immediately stopped. We re-positioned, and tried one more time. It still didn’t work. We stopped.
I remember being stunned for days. We had finally decided we wanted to have sex, so what was this issue? Was I too small? Was he too big? Were we using the wrong angle? Were we not using enough lube? Would it get better over time? Would it never get better?
I went to my family doctor for help. Luckily, she believed that I was having an issue right away. I’m thankful for that as well. I’ve read accounts online by other people, and I know that many people go years and years without doctors believing them and without their symptoms being diagnosed or treated. My family doctor did swabs, which were negative for infections, and then referred me to a gynecologist. The gynecologist was less helpful, and honestly somewhat traumatizing. She told me that I maybe had a yeast infection, and gave me medication. She also told me I maybe had inflamed Bartolin’s glands.
“What’s that?” I asked.
I was in university and working on a biology degree. “Like, leftover from evolution?”
“Yes, like from monkeys.”
I told my boyfriend. “You have infected monkey glands?”, he asked, and laughed. I started crying; I felt like a freak. He quickly apologized.
The “monkey glands” didn’t get any better. I continued to feel like a freak. We couldn’t have penetrative sex, he couldn’t put fingers inside, and I couldn’t use a tampon for more than a few days on my period.
I got referred to a different gynecologist. This one specialized in the vulva. She heard my story and, after about five minutes and a very brief exam, told me that I did not have a yeast infection or inflamed cysts, and what I actually had was vulvodynia.
Treatments for vulvodynia are varied: short term numbing gels, long term goopy creams, pelvic physio, home physio, improved mental health (turns out that when your brain goes haywire so do your vaginal pain receptors), etc.
Physiotherapy had the most benefit for me but the effect was slow. I pushed hard at it for years, and it didn’t seem to make a difference. I hated my vagina. I dreaded sexual intimacy because it felt like it was supposed to “end” with penetration and, because ours didn’t, I felt like it was My Fault. I was often anxious when we did anything sexual, because some part of my brain was thinking, “Your only options for the rest of this encounter are pain or failure.” My partner and I were really in love in lots of ways, but sex often felt sad and awkward and I had so much guilt. No matter what anyone said – my partner, my family, my friends – I felt like our sex was broken and I was to blame.
It stayed that way for about six years. I was really happy in my relationship anytime we weren’t having sex, and not that happy when being intimate.
And then, slowly, little things started stacking on each other and making a difference.
I finally finished a really intense degree, and started therapy, and my anxiety dropped way down. I read a lot of books and stories about all the wonderful ways people have sex, and how it’s all Real Sex. I moved away for a couple years for more school, and ended up being long-distance from my partner. Because of that, I stopping doing regular home physio, and instead only did it when I was going to see him again. Physio stopped being an obligation I was failing to do, and instead became something I did because I was looking forward to seeing him. My partner and I had some really deep and honest conversations about what intimacy meant for each of us. Slowly, slowly, we started having some lovely, whole-hearted sex, regardless of what our genitals were doing. It felt sweet and right.
I remember the first time my partner came inside me, and we both cried. It felt so hopeful. Before then, I hadn’t been able to last long enough with anything penetrating for him to come. “Hey - maybe we can have kids.” He whispered later that night. I hugged him tight. We giggled. Mostly, we were so happy that we’d been able to share the experience together.
Today, my vulvodynia experience is no longer a grey cloud of shame and sadness. Life is better. I accept that my body does some things really well, and other things not so well. I delight in physical intimacy and I love sex. I have unlearned the idea that I need to “give” my partner “good” vaginal sex to be …what? Successful? Interesting? Look, I’m a catch. He’s lucky to have me.
I’m not cured. I don’t think I’ll ever be cured. I’m going to have chronic vaginal pain for the rest of my life. I still cry over it sometimes. It would be much easier if it didn’t exist. It hasn’t made my life better or richer in any way. And yet, I’m really okay. With the bumps in the road and growth along the way and all - here I am. Occasionally uncomfortable, but mostly at peace.
PS. The most comprehensive paper on vulvodynia assessment and treatment I’ve read is “The Vulvodynia Guideline” by Haefner et al (2005). It was passed to me when I was first diagnosed and it has been helpful to me for understanding vulvodynia and treatment options along the way.