10 Things I’ve Learned Living With Vulvodynia

If you don’t know what vulvodynia is, I don’t blame you. Many people have never heard of the condition, but I’m one of the 16% of women affected by this condition and have learned so much since being diagnosed with it.

My symptoms weren’t all in my head. I was finally diagnosed with vulvodynia in 2011, after eight years of constantly being misdiagnosed and told that the pain wasn’t real, that it was in my head. If you’ve ever had someone tell you that you’re faking your pain, you know how frustrating and hurtful this is. My pain was definitely real; some days it was so debilitating I would spend huge portions of my work shift crying in the toilet cubicle, unable to bear sitting down in an office chair for another minute. To go from one doctor to the next and be told that there was nothing wrong with me was earth-shattering. If there was nothing wrong, then why did it hurt almost all the time? Why did penetration during sex feel like a hot knife?

There’s no cure for vulvodynia. Medical professionals who believe in vulvodynia (read: who believe their patients when we explain our pain and symptoms) characterize it as a burning, stinging, and sharp pain that occurs in the vulva and the entrance to the vagina. Sometimes it’s constant, sometimes it’s intermittent. Sometimes it happens only when the vulva is touched. Either way, there’s no cure for the condition.

They still don’t know what causes it. There are a bunch of different theories, though: trauma during sex, inserting tampons, horseback or bike riding, some other kind of never trauma from an injury, a prolonged yeast infection… This is another part of the reason it’s so hard to get a diagnosis.

I almost didn’t find out what was wrong with me. I was at the doctors for something completely unrelated, but she picked up on my constant repositioning and shifting of weight on the chair through the consultation and asked me a question, delicately phrased, that no one had ever bothered to ask me before: “Is it often uncomfortable… down there?” The answer was yes,

I didn’t have to just “live with it.” This doctor had some knowledge of the condition, and it was because she was educated on this very specific and rare problem that I was finally able to get help. I was referred to a specialist clinic and after some tests, I received both a diagnosis and a treatment plan.

I’m not broken. I was afraid I would never be able to be in a long-term relationship because I wouldn’t be able to fulfil my partner’s needs. Intercourse during a flare-up is so painful, it could reduce me to tears sometimes and leave me irritated and anxious for days. I felt a huge amount of guilt about this. I had partners in the past who were unsupportive of my condition. It was even one of the reasons my ex gave me for wanting to end our marriage. I had to stop thinking of myself as ‘broken’ and start accepting that my condition was what was normal for me. Once I took ownership of my own boundaries and limits, it didn’t stop me from engaging in fulfilling, intimate romantic relationships. In fact, I’m in a happy, loving and committed relationship now, and while vulvodynia may sometimes make it difficult to have sex, it doesn’t stop us from sharing plenty of other parts of our lives.

How often I have sex doesn’t define my relationship in any way. You can have all the sex in the world and still be in a loveless relationship. It took a while for me to stop assuming my vulvodynia was going to sabotage all my romantic relationships and make me a cat lady for life. Once I stopped believing my sex-life was the be all and end all in my romantic relationships, they became infinitely more fulfilling.

Having this condition became a blessing in a way. It forced me to be discerning about the kind of relationship I wanted. I didn’t want a relationship centered on sex, I wanted one that was built on shared goals and hobbies, good conversation, and side-splitting laughter. How frequently these things occurred was way more important to me than how often I could bump and grind with my significant other.  In the end, I focused my energy on other aspects of the relationship, and the end result was a rewarding partnership.

I can still be sexy. When you’re diagnosed with vulvodynia, you have to kiss the lacy g-strings and lycra body suits goodbye. It’s all cotton, all the time from now on. At first I was embarrassed about this—especially since I was actually shamed about my granny pants once before, and not even by a sexual partner!—but now that I’m confident in my own skin, I realize that sexiness is a state of mind.

Pain is manageable. When I started my journey with vulvodynia, I thought I was destined to just be in pain forever whether I was sitting down or having sex. Thankfully, that wasn’t true. Although I had to make changes to my lifestyle and be strict about some things, I found a way to manage my pain. Sometimes I carry around a spare pair of underwear with me so that I always have fresh cotton panties when I need them. I change straight out of my bathing suit after I go swimming. I have to use moon cups and THINX underwear instead of tampons and skip out on jeggings. However, these were all small sacrifices for me to make to manage my pain. I still rock a nice pair of black leather jeans at the club every couple of months, but I’m careful not to spend too long in them. I still wear a bodysuit now and again, but only for a couple of hours. By being active about my pain management, I’m still able to live my life to the fullest, and if that means doing things a little differently to other women, that’s OK. Being different doesn’t mean I’m broken.

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