My vaginismus and vulvodynia diagnosis
When I feel pain, I see pink. I was 18 at my first gynecologist appointment when I first saw that dreaded shade of hot pink burst behind my eyelids. The doctor was (attempting) to perform the pelvic exam typical for first-time patients. This exam, though at times uncomfortable, should be straightforward and pain-free. However, when the doctor applied light pressure to a specific spot on my vulva with her finger and then a cotton swab, I saw that fiery pink as I recoiled in sudden, burning pain. It felt like something was stabbing me from the inside out.
As someone who had not had penetrative sex or used tampons before, this was the first time I realized something was not right. The doctor quickly stopped the exam and diagnosed me with vaginismus. This condition, which affects 0.5 - 1% of people with vaginas, causes your pelvic floor muscles to spasm or involuntarily tighten, making it difficult to insert anything into the vagina. With this new unsettling diagnosis and the lingering feeling of that sharp pain, I left the appointment in tears.
What did this all mean?
After the diagnosis, I felt a deep sense of shame, embarrassment, and powerlessness. Was there something wrong with me? Had I done something to cause this? Why wasn’t I able to control my body and stop this pain? I’d like to say I jumped into addressing these questions, but in reality, I ignored them. For a few years, I tried to forget about what happened at the appointment and didn’t take any action to understand my condition.
Truth be told, I suppressed the realities of my condition for years. However, as my empowering support network and self-confidence grew, I began to realize the innate power of my body and its many nuances. My condition was not a reflection of my identity as a woman, and I was not alone in my experience.
Though historically there haven’t been many formal studies on vaginismus and other conditions that result in vaginal pain (medical personnel and advocacy organizations are pushing for this to change!), there are many people who have experienced it. I dove into reading blogs and perusing community support pages -- there were countless others who suffered from vaginal pain during sexual intercourse or vaginal insertion (medically referred to as dyspareunia) who were supporting one another, finding answers, and sharing knowledge.
Vaginismus & vulvodynia
The more I explored these resources and learned about vaginismus, the more they didn’t accurately describe the symptoms I had come to better know with some self-exploration. No penetration was necessary to see hot pink rays shoot across the back of my eyelids; all it took was applying pressure with my finger to a singular spot on my vulva. It was on one of these community support pages that I learned about vulvodynia, another condition that causes consistent vulvar pain between 16 and 25% of those with vaginas.
Unlike vaginismus, vulvodynia causes pain when pressure is applied to either a specific area or various areas of the vulva. People with vulvodynia described their pain as searing, throbbing, and burning. One person even articulated her pain as what she thinks it’d feel like to be stabbed from the inside out. **Queue a pink-shaded light bulb flashing on in my head**
I immediately booked an appointment with a gynecologist who had experience with dyspareunia. After sharing my research and a painful examination, the doctor agreed that my symptoms were those of vulvodynia. It was affirming to have my diagnosis corrected, which may have not happened without the steadfast online community of those who had experienced a similar situation.
I have the correct diagnosis. Now what?
The exact causes of vulvodynia have not yet been confirmed. This said, there are a number of hypotheses. Previous injury to the nerves in your vulva, change in hormones, and weak pelvic floor muscles are just a few. Depending on the severity and the suspected cause of vulvodynia, treatments range from topical pain medications to surgery. In my case, none of these possible explanations lined up with my health history. With this in mind, my doctor recommended a more general treatment approach: that I couple pain-blocking medications with a topical anesthetic to dull the nerves that fired pain signals off to my brain. The idea was for me to take the medication and apply the anesthetic before attempting to insert a tampon. Whoosh. I started the treatment and struggled to make it work; I experienced some side effects from the medication and just wasn’t able to successfully insert the tampon without pain. I felt discouraged but was not ready to give up.
In an effort to try all options, I decided to purchase my first vibrator (it was hot pink). I had read that some people with vulvodynia had success inserting a tampon using the topical anesthetics after some relaxing breathing exercises and/or masturbating. For me, this really helped. With countless attempts to insert a tampon after relaxing and applying the anesthetic (I decided to stop taking the pain-blocking medication due to side effects) on the books, one day it happened. I was able to insert the tampon without too much discomfort! I also realized that once I bypassed the sensitive spot of my vulva, I no longer felt the searing pain and could wear the tampon throughout the day.
After inserting that first tampon, I persisted in my treatment for months. And, after a lot of relaxation, topical anesthetics, and coming to understand my body and particular pain point better, I was able to consistently use tampons and, eventually, have pain-free sex. Today, this remains largely true. However, I do still see those flashes of hot pink when I visit the gynecologist or remove my menstrual cup.
As my quest for understanding regarding my condition continues, I know one thing to be true: if you experience any type of vaginal pain, you are not alone. If you think you may have vaginismus, vulvodynia, or another condition that causes vaginal pain, we encourage you to talk with your primary care provider. We also have a resource on our blog that describes these conditions further, which you may find here.