I’ve debated writing this post for some time now. I don’t feel embarrassed – not with you, Persephone readers – but I do feel reluctant to expose myself to certain sorts of criticism, of which I have had my fill in the last three-odd years. However, what convinced me to talk about this issue and my personal experiences with it was something my doctor told me at our last visit: “Most women go their whole lives feeling ashamed just because they and their doctors have never heard of this disorder, and everyone finds it easier to blame it on their minds, anyway.” So I’m going to open up and share here. Some of you may think, “Wow, that’s more than I ever wanted to know about you.” But others, maybe just a few of you, will read and find an answer for which you have been searching for years.
I was a virgin, a super-duper-never-so-much-as-done-more-than-kiss-on-the-lips virgin, when I got married. And my story is this: on my wedding night, I discovered I couldn’t have sex. Note: not wouldn’t have sex, but couldn’t have sex. You hear people describe losing their virginity in a number of ways, but feeling as if someone is stabbing you with a rusty blade in the worst possible way is rarely the common descriptor. We ended up having a great honeymoon, but a honeymoon completely without sex.
8 months and a therapist later, Mr. Michelle Miller and I had not had intercourse even once. I had seen several gynecologists, one of whom referred me to a therapist. They all told me that there was no cause for my pain and that it probably wasn’t real. One told me I might believe I was feeling pain, but really, I was just creating the sensation in my mind. But I was feeling pain, I told them. “Sure,” they said, and patted me on the head. After 8 months of trying this and that, of being told I had daddy issues, of being told “You’re not doing it right” or “You’re not doing it enough,” of being told God was punishing me for being a feminist, I had had enough. So I told Mr. Miller that I wanted to try again. I gritted my teeth. I shut my eyes. When we came to the part where we always stopped because the pain was too much, he didn’t want to keep going, but I made him. And it was horrible. And it was wonderful. Horrible because I bit into my tongue so I wouldn’t scream from pain. Wonderful, because I realized that the experience had not killed me. I was still alive. I could learn to endure this. And for me, to this day, that is sex. Once every month or two, when my hormones just can’t take it anymore or I’m feeling hopeful, I try.
A few months ago, after yet another disappointing gynecology appointment that had left me grief-stricken and hopeless, I got an email from my mother about a condition of which she’d heard a fleeting mention in a recent documentary. The condition was vulval vestibulitis, now known as vestibulodynia. I had never heard of this condition and not ONE of my doctors had mentioned it. I booked an appointment with one more gynecologist (now the fifth I had seen). She, unlike all the others, did not roll her eyes and sigh at me when I explained all my difficulties (“What a silly little virgin!” is usually the expression on their faces). She had heard of this condition, and when she had finished testing for it, she sat back and apologized to me for every gynecologist I’d ever seen who had ignored my complaints, who had stuck a speculum inside me and chastised me when my body tensed and quaked and I couldn’t breathe. She said, “You have textbook vulvar vestibulitis, but we can do something about it.”
Confession? I cried. Right there on the exam table. Three years of shame fell away. Three years of self-doubt and self-loathing. I had never hugged a doctor at the end of an appointment, but I did that day. Even if my case were incurable, at least I had a name. At least I could say, “This is a thing, and this thing is not in my head.”
Now that I have some perspective, I see that I came face to face with the same old thinking about women and illness. The common line is, “You’re imagining. It’s not as bad as you’re saying it is. You must be getting some of the details wrong.” Only now are researchers realizing that women have been coming to doctors with this problem for decades. Only now are they acknowledging that this is a “thing” women get and not merely the manifestation of some mental hangup. An article by Dr. Julius Metts suggests that as much as 15% of women have this condition in varying degrees of severity, which means that doctors are constantly misdiagnosing it. He goes on to say the following:
Most patients consult several physicians before being diagnosed. Many are treated with multiple topical or systemic medications, with minimal relief. In some cases, inappropriate therapy may even make the symptoms worse. Since physical findings are few and cultures and biopsies are frequently negative, patients may be told that the problem is primarily psychologic, thus invalidating their pain and adding to the distress.
I’m not great at math, but according to Dr. Metts, more than 1 in 10 women have the same problem I do. And yet many doctors still know nothing about it. Not a thing. How many other women out there suffer in silence like I did because doctors tell them their pain isn’t real.
Ladies, we cannot be cavalier about our health. We cannot. While medicine has made many strides in understanding the female body, ultimately, women still face many of the same pathetic attitudes toward our suffering that defined centuries past. This experience has taught me that no one will fight for my health but me. I’ve learned that looking up information on my own and demanding that doctors (male or female) hear me, has to be par for the course. We have to be willing to stamp our feet and shout, ladies, until they hear us. We may be women, but we are not hysterical.
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