I thought my vagina was broken — turns out I have this little-known disorder

I was 27 when I finally told a doctor for the first time.

“My vagina doesn’t allow penetration,” I explained. “I can’t even insert a tampon. It feels like I’m hitting a wall, and the pain is excruciating – a blinding searing, like I’m being torn open.”

My GP told me she suspected I have vaginismus, a pelvic floor dysfunction.

Vaginismus is the involuntary spasming of the pelvic floor muscles that makes vaginal penetration either impossible, difficult, or painful.

“The pelvic floor is guarding the body,” says Dr. Angela James, Specialist Pelvic Health Physiotherapist and founder of Sydney Pelvic Clinic.

“With vaginismus, at some point the body has learned to fear penetration or anticipate pain, either because of fear, a narrow vaginal entry, an unbroken hymen, certain exercises, or trauma, including bad experiences with sex, tampons, and Pap smears.”

Though it’s unknown exactly how common vaginismus is, Dr. James says one in five women will report pelvic pain at some point in their lives.

Eventually, I was diagnosed not only with vaginismus, but two other pelvic pain conditions: vulvodynia, a common external pelvic pain, and congenital vaginal stenosis, a rare narrowing of the vaginal canal.

Keeping my “broken” vagina a secret

It was a relief to have the diagnoses, but I was also angry.

In sex education, they’d never mentioned it might be impossible to insert a tampon, let alone have penetrative sex or a pelvic exam.

So for over a decade, sure my vagina was “broken”, I had avoided it all, and didn’t tell anyone why.

Even with a diagnosis, the shame was all-consuming.

Surrounded by friends who enjoyed casual sex, were in long-term relationships, or had given birth, I thought I was alone.

When I searched online, people mostly spoke about vaginismus in private groups and anonymous forums.

The message was clear: we don’t talk about this publicly. We whisper to doctors and physiotherapists, and then we use dilators secretly until we’re ‘cured’ and never have to speak of our shame again.

In a moment of desperation, I joined in, spewing my darkest thoughts into an anonymous Reddit post.

“Does this problem make me undateable?” I asked.

“No man would want you,” someone replied.

“Yeah,” I wrote back. “That’s my biggest fear.”

Ironically, that person’s reply helped free me from my shame.

Why am I posting anonymously, asking strangers on the internet? I asked myself.

Why am I so concerned about what male partners will think?

And in such an apparently sexually liberated era, why is such a common condition still so taboo?

Secrecy is part of the problem

For Dr. James, conditions like vaginismus and shame go hand-in-hand due to the long history of male-led healthcare.

“Anything to do with female sexual anatomy has largely been ignored,” she explains.

“And when things are ignored, they remain shameful, secretive, and taboo.”

To break the cycle, Dr. James says raising awareness and seeking help early is critical.

“Because people are ashamed, this issue often stays a secret for long time, so people are suffering in secret and having this effect the quality of their life for much longer than they need to.”

‘Common but not normal’

“We need to empower people with knowledge so they know these conditions are common but not normal, and that there is effective treatment out there,” she adds.

For vaginismus, Dr. James says treatment should be a multi-modal, trauma-informed, person-centered and goal-oriented combination of education, graded exposure, fear management, nervous system regulation, pelvic floor muscle down training, body awareness and relaxation techniques, vaginal dilation therapy, psycho-sexual therapy, and, in severe cases, Botox.

“Botox injections into the pelvic floor shouldn’t be seen as an isolated intervention,” Dr. James warns.

“It’s not a quick fix because it doesn’t address the psychological component of vaginismus.”

Addressing the mental and physical

As I began treatment, I realized I was contributing to the cycle of shame that leaves people feeling embarrassed and terrified of speaking up.

So I started telling people about my diagnoses.

First, I told my best friends, who showered me with love and support.

Later, I told a sexual partner. He listened calmly and responded without judgement.

More of my shame and fear evaporated.

Now, I’m telling the world, and though I’m nervous to put my name to this article, I know exactly why I’m doing it.

It’ll be just like that quiet dinner I shared with a friend.

At the time, we didn’t know each other very well, but I decided to tell her what I’d been going through anyway.

Nervously, I explained my diagnoses.

Her face fell.

“I think I have the same thing,” she said. “And I’ve never told anyone, either.”