Vaginismus: A Personal Photo Essay

I’ll never forget the moments, weeks, and months where I discovered what true shame feels like. The funny thing about shame is that it issomething we all experience as humans, one way or another. Yet, we inherently don’t want to go near it or try to confront it.

But, I have learned, the only way out of shame is vulnerability and not feeling alone in it. Each day I try to make peace with my vulnerability so that I don’t have to carry it around with me day after day. I learned to tolerate uncertainty and not go in to despair.

This is my own story, and it is something that I have never spoken about openly and publicly, until today. 

Two years ago, I found myself sitting in a gynaecologist’s chair, legs up in the stirrups, while the doctor attempted an unsuccessful pelvic exam on me. It was my third that year. She told me to sit up and explained that I have a condition called Vaginismus. A word that I had never heard before.

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She described it as a muscular disorder that results in an involuntary vaginal muscle spasm, which makes any kind of penetration severely painful or impossible. She said it was likely that I was born with it, but that it is curable with intense physiotherapy and counselling. 

Initially, I felt relief, because I finally had a word to describe the pain I had been experiencing for so many years previous, including things from not being ever able to use a tampon, to having “traditional” sex experiences, which brought me great shame, confusion, and frustration throughout my adolescence.

This uncontrollable reaction was something that other doctors had always labeled as nervousness, something I never felt towards these fairly normal things. I wanted to take part, but my body simply would not let me. My inadequacy had always been this thing I put on the back burner, something I wanted to shut my eyes to, urging it to disappear. This ultimately took it to much higher levels. It was “official.”

Now, before you cringe at my admittedly forward story here, know that it is commonly accepted that 2 in 1000 women have vaginismus. That’s one point two million women worldwide. That’s a lot of women. AND this number is expected to be much higher, as many of us not included in this statistic are misdiagnosed as being nervous, while others do not seek help at all due to their shame and embarrassment linked to speaking about such issues. It is particularly a problem in countries where sexual health is not as openly discussed.

But where are we? Where are our stories? And why aren’t we telling them?

Needless to say, that initial relief I felt when I was told about Vaginismus did not last long. I found myself feeling suffocated and I was constantly asking “why me?” I desperately did therapy during my breaks from school, but none of the methods were working. There is an excellent treatment centre in New York that I truly believe is my answer to relief. However, as student, I do not have the time or the financial means to do it.

I’ve had to accept myself, and ultimately ask others, to accept me as I am, as I put my recovery temporarily on hold.

For a long time, I couldn’t stop thinking about it and it was eating me alive. I didn’t feel like a woman, I certainly didn’t feel worthy of love, and the pressure I had put on myself to get better was absolutely overwhelming. Every time I thought about it, tears would come. I had become extremely sad.

I had this bottled-up secret that I hid from nearly everyone I knew for years and I felt that I couldn’t talk to anyone about it due to the deep shame and incompetence I felt. It smothered my spirit and that is wrong. No one should have to feel so much shame and anguish over their own body. I forgot about all of the good things about my body, and that I’m am so lucky to live in a healthy and a strong one.

That is, until now. Recently, I have felt more empowered by my condition in knowing that people do not judge me or see me differently because of it.

I feel like I have the capacity and the strength to not only share my own journey living with such a taboo and undisclosed disorder, but to perhaps motivate other women, those 1.2 million plus in same position, allowing them to not feel the isolation and the hopelessness that I once did by knowing that they are accompanied by other strong women in this emotionally trying physical condition. 

Meredith Sherlock, May 2018