The Scoop: Filmmaker Shelby Hadden is creating an animated film to shed light on pelvic pain. specifically, vaginismus.
Recent evidence suggests that 43% of women have some form of sexual difficulty. Unfortunately, however, female pain is often ignored or trivialized by doctors, making diagnosis and treatment a strenuous process. After experiencing a decade of chronic pelvic pain, Austin-based filmmaker Shelby Hadden decided to create "Tightly Wound," a short animated film that sheds light on the underrepresented and misunderstood condition of vaginismus.
First, for those who are not familiar with the condition, can you explain what vaginismus is?
Vaginismus is a pelvic floor condition characterized by involuntary contractions of the pelvic floor muscles - causing pain, penetration problems, and inability to have intercourse.
Can you tell us a little bit about your journey in discovering you had vaginismus, from your first experience to your diagnosis?
When I first got my period, when I was 14 years old, my mom handed me a tampon and a jar of vaseline and ushered me into the bathroom. When I tried inserting it, it would not go in. I experienced excruciating, stabbing pain. Every time I got my period, my mom encouraged me to try again, but I knew something was wrong, and no matter how much vaseline I slathered on it, or any position/angle I tried was not going to work.
Like many young women, my period was very irregular and I could not predict it's onset for years. Because of this, I RSVP'd "no" to pool parties, and avoided planning beach trips with my friends. I bought dresses for proms and special occasions with big, full skirts in case I had to hide panty lines or pads. I ran cross-country and our uniform included spankies (basically bathing-suit bottoms) and whenever I had a race and my period, it was a nightmare trying to hide a pad in one of those things. I also carried tampons around with me to pretend I used them.
I first saw the word vaginismus in my Human Sexuality textbook during my freshman year of college. As soon as I read it, it felt like something clicked - that's definitely what I had! But the definition included, "caused by sexual trauma." This part confused me because I had never been assaulted, so then I felt guilt about having vaginismus without a "good cause" like victims of assault. Some doctors tried to convince me that I must have been assaulted and repressed the memory. But trauma is only ONE cause of vaginismus - not THE cause.
What was your treatment process like? What were some of the challenges you’ve faced, and breakthroughs you’ve had?
I had seen about 10 doctors over the course of 7 years. I tried a lot of bad treatments - one being inserting candles into my vagina when I was on my period. Someone suggested to do kegels every day - kegels only exacerbate the condition. One was sick of my knees snapping shut every time she came close with the speculum, that she had a nurse HOLD THEM DOWN AND APART while she forced it in! It was very traumatic.
I finally found my first pelvic floor physical therapist in Nashville, Tennessee, when I was 21 years old. I went to her office twice a day where she'd stick her hand inside me and work on my pelvic floor. I practiced inserting dilators every day at home. By the end of the summer, I was able to use a tampon for the first time. I was 21 years old, moving to TX to start graduate school, and I used a tampon for the first time.
I then moved to Texas, and continued doing my exercises. About a year and a half after I moved here, I dated a guy who laughed in my face when I told him about my vaginismus - so I decided to go back to PT. I've been going to PT regularly ever since. I'm now using the large size dilator! (I started with an extra small.) I had my first pain-free exam at the gynecologist this summer! ...Pap smears used to leave me sore for days. So things are going well!
What do you wish the medical field knew about pelvic pain that it doesn’t acknowledge now?
I wish they'd show a little more empathy. There's such a deep-rooted history in dismissing women's pain as purely psychological. Those of us with pelvic pain have all been told that it's all in our head or that we should drink alcohol when we want to have sex.... how is that medical advice??? No one would say that to someone with back pain.
How have others in your life (friends, family, partners) responded to your vaginismus? How do you tell people about it?
My friends and family have been incredibly supportive - even though I know it was a little hard on my dad when I started publicly telling my story! Ha! But it is hard, because people who have never experienced it don't really get it, and before I started sharing my story publicly, I didn't know a lot of others who did. So it was very lonely. Now, I've heard from women around the world, and I feel like what we have it so much more normal now!
Partners have not been so kind. I'm 25 years old and have never had a boyfriend, and I think that vaginismus has played a big role in that. I mentioned the guy who laughed in my face - another told me he really liked me and still wanted to date me, but the next day, he TEXTED me to say that sex was "too important" to him - he clearly had never considered how important it was to me. There were others too...
I always say something along the lines of "I have a pelvic floor condition," or "I have pelvic floor dysfunction," and then describe it. It's funny, because when people hear my stories of my failed attempts to be sexually active, they say, "why don't you describe it like a medical condition?" ...that's EXACTLY how I describe it, because that's EXACTLY what IT IS.
You are currently writing/directing/producing a short film about your experience. Can you tell us more about the project and what it means to you? What do you hope people will get out of it?
I think this project is the most important thing I've ever done. It's played such a big role in my healing process and climbing out from under the shame of this secret has been extremely liberating. I've been hearing from women all over the world with pelvic pain, and my project has been supported by medical professionals in 6 states and counting. We need this story and these conversations out in the world, because they're just not yet.
Like any good piece of art, I hope that the film makes people feel less alone - whether it's because they have pelvic pain, or because they feel inadequate or insecure about dating and sex (which I think is pretty common!) I want to start conversations about virginity... we talk a lot about slut-shaming, but never virgin-shaming. Can't all choices when it comes to our sexuality be valid and respected? There's a lot of shame in being a virgin as you get older. I also hope to raise awareness so that people know about pelvic pain like they know about STIs. People know the kinds of questions to ask - there's a framework for it. I've found with my partners that they just freak out because they've never heard of it before.
What went into your decisions about the use of animation and narration as opposed to live action film?
Pelvic pain is a very internal experience - physically, emotionally, mentally. So aside from treatment being not very cinematic, I wanted to be able to express how it feels to live with chronic pain. 2D animation is so fun to write because a line can become a sailboat, and then a bunny, and then a word. It's limitless and poetic, so I can better illustrate the experience rather than having a bunch of talking head interviews describing what it's like to live with it.
Just for fun, what do you think is missing in sex education in this country? What information do you think would have helped you in your journey?
Oh, so much. I wish someone shared a broader definition of the word "sex" rather than PIV penetration. I wish someone explained that there's no "normal" and that sexually is on a spectrum - people vary in how much sex they want to have, what kinds they want to have, who they want to have sex with. I also wish young women were taught how to be advocates for their own health, bodies, and sexuality.
I think that having better sex ed would mean that women would know the language to use and resources to turn to when things aren't working right. It means that they would have the tools to better recognize sexual assault and how to stand up for themselves.
To learn more, and contribute to Shelby's project, check out Tightly Wound on Kickstarter!
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