I remember the day that I knew something was wrong with me like it was yesterday. I was 16 and the summer sun beat down on my face. It should have been an amazing day with friends, but I sat on the edge of the water as my friends cooled down in the clear water. “Why won't you swim with us?” they asked, to which I replied that I had my period. Their faces screwed up with confusion: “just use a tampon!” they exclaimed, to which I quietly admitted: I can’t.

My teenage years were filled with feelings of being confined in the jail of my own body. 

I justified my pain, convincing myself that all women endure pain and that this was normal, that someday and somehow, the pain would stop—it didn’t. As my friends began embarking on their first sexual experiences, I smiled and encouraged them before crying to my partner that something was wrong. I couldn’t have PIV (penis in vagina intercourse), I couldn’t use tampons; I felt as though what were supposed to be my most care-free years were stolen from me by continuous experiences of pain. The next two years admittedly blurred together in constant panic attacks to my partner who assured me that sex was not everything in a relationship and that someday, I would figure out what was going on.

When I was 18, I stumbled across a website in my continuous search for an answer to why I couldn’t have PIV. 

I remember my heart skipping a beat when I read the definition of vaginismus: “a condition involving a muscle spasm in the pelvic floor, making it painful, difficult, or impossible to have sexual intercourse and to insert a tampon”. 

Although this was the first time I had ever heard of this condition, I just knew that this was what was happening to me. Something deep within me felt as if I had finally discovered the key to all my pain and feelings of inadequacy and just like so many other individuals with pain-related conditions, I saw the diagnosis as the solution to all of this…I had faith in the medical system.

 

My first attempt at being diagnosed is something that I still struggle with today, five years later. As I nervously lay down on top of the cold plastic of the patient bed, I outlined my experiences to my doctor, who looked at me with a face filled with confusion as she asked me: “So you are 18 and you still cannot use a tampon?” No… I replied. She seemed taken aback by this. She decided to do an exam but did not warn me of what that exam would entail, which resulted in my screams of pain echoing throughout the clinic as she performed an internal exam. She told me to calm down, to which I started spasming in pain and anxiety. I thought that surely after seeing my pain in action I could finally get help, but I was shocked and confused when the words came out of her mouth:

“Everything looks normal in there to me!” she exclaimed.

I remained frozen in the fetal position, and my face changed from pain to absolute confusion. I quietly asked if there was anything that I could do to make PIV possible for me. “Try drinking a few glasses of wine beforehand to relax,” she said nonchalantly before shutting the door. That was the very moment that I knew that obtaining a diagnosis and getting help was something that I would have to facilitate myself and that it would be a very difficult process. I felt as though I had to convince doctors that the pain was real, that I was actually experiencing it.


It took me a year to secure an appointment with an appropriate gynecologist that could diagnose me. When I finally did, I told her that I was convinced that I have vaginismus and that I really needed her help. The exam went about as well as my first one and my screams of pain carried into the waiting room where my mother sat. The gynecologist handed me a pamphlet afterward, and though my tears blurred my vision I could make out the word ‘Vaginismus’; I finally obtained the diagnosis that I thought I needed. It felt as though a weight had been lifted off me like my pain finally being acknowledged as something real by a medical professional justified my experiences and justified the struggle I had faced over the years. 

I perceived a diagnosis as the key to happiness, the fix to my problem, the key to ‘fixing’ me. 

My vision of hope was immediately snatched away from me when my gynecologist told me that she could get me on the waiting list to see a sex therapist but that it could take up to two years. It was at the end of this appointment that I cried to my mom, telling her that I needed to self-advocate for myself and find a way to get the help that was outside what was being recommended to me. She agreed, and said she would support me with whatever I decided to do.

The next year was spent obsessively scouring the internet for alternate treatments which led me to a plastic surgery clinic that administers Botox in the vagina to ‘freeze’ the muscles and allow people to cure themselves in the six months that the Botox lasted. I spent hours watching videos of individuals with vaginas outlining how Botox cured them, how they finally were able to achieve some normality in their sex lives as well as their menstrual lives (in regard to being able to use tampons) and I was sold. That was until I saw the hefty price tag for these kinds of surgeries, as it (1) had to occur in the United States of America and (2) had to occur in a private hospital. I was incredibly lucky to have my late grandfather assist in paying for the surgery, and I traveled to the US to finally get help. What the videos did not outline about Botox was the fact that the six months following the surgery would be filled with intense physical therapy, valium for the anxiety, dilator therapy at home when I was not at the clinic, and a lot of self-reflection of why I was so scared of penetration. This time of my journey was incredibly hard, and I lost myself in the goal of achieving PIV without taking time to care for myself and everything I put my body through. I stayed in a relationship that I was not happy in because I felt as though no one else would love me due to my ‘broken’ vagina, and I burnt myself out by putting constant pressure on myself to progress faster, be cured quicker. After over five years of medical visits, dismissal of my pain, a myriad of treatments and medications, it finally worked. 

I am now medically ‘cured’ and able to have PIV intercourse with no pain.

Though my battle with Vaginismus was long, I am lucky that it ended in the way that it did—most people are not so lucky. My experience as a teenager and young adult made me passionate about issues in the health care system regarding gendered notions and pushed me to pursue a thesis examining how individuals with vaginas navigate a system that is so highly gendered. It quickly became very clear that I was one of the lucky ones as I had access to these kinds of treatments. I thought that six years of pursuing help was lengthy but realized that diagnostic lapses simply are the norm for ‘medically unexplained’ symptoms of pain and that the average was ten years for the diagnosis of sexual dysfunctions. Somewhere in the history of science justifying ‘difference’ between the social construction of gender has led to the justification of dismissing pain relating to vaginas; the centralization of the ‘male’ experience has resulted in this dismissal, and individuals with vaginas are the ones suffering.

The health care system is significantly biased when it comes to gendered pain, and my story is just one of the endless experiences of this bias. 

I am incredibly thankful and lucky that I was able to receive help and be listened to when I self-advocated, but it is important to note that this is not the experience of so many individuals attempting to get help for chronic pain-related conditions. If you are experiencing symptoms of Vaginismus and feel stuck, lost, and hopeless like I did—know that you are not alone. In the midst of enduring sexual dysfunctions that are so often dismissed by doctors, it is easy to slip into a state of depression that stems from feeling alone and trapped in a body that will not cooperate with your brain, but even in the most difficult cases there is always hope, and there will always be people who understand your experience.

Ellie White

Ellie White is an honours sociology major at SFU. After suffering from vaginismus for her entire teenage life, she decided to pursue research in chronic pain-related conditions, specifically sexual dysfunctions. She is currently writing her BA honours thesis on the gendered health care bias and how chronic pain sufferers navigate it. You can follow her on Instagram at @ellieannwhite.