While sometimes you have to laugh at the bad advice and medical professionals ‘hooning their fingers next to your girly bits’, vestibulitis, a form of vulvodynia that affects the nerves of the vagina, is no joke.
I’m standing in the health and beauty aisle at Countdown, staring at the wall of “feminine hygiene” products and shifting from side to side. This is the third time I’ve been here this week, along with two other supermarkets.
The shelf where my pad of choice usually lives stays resolutely empty.
At $2 for 16, the Homebrand pads were not only far cheaper than any of the usual big names, they also ticked bunch of other vital boxes – soft, no unnecessary scents or dyes, and they didn’t feel like stuffing a wedge of cardboard between your thighs.
My anxiety rises, and I cast a wild eye around and spot a woman in Countdown uniform coming my way. I suck in a breath.
“The Homebrand pads with wings,” I blurt at her. “I don’t suppose you’re getting any in?”
“Nope,” she says. “Sorry, not making those any more.”
Earlier in the week, I’d assumed the disappearance was a supply issue and reluctantly bought something else. I went home and wore the substitute – U by Kotex, which cost $5.85 for 16 pads – for approximately 25 minutes before I ran to the bathroom to get rid of it. The blue dye combined with the unfamiliar fibre had sent my vagina into overdrive. It burned.
This is not an unusual experience for me.
Now, staring at the same options on the shelf, I can still feel the sting between my legs. I know it’s a psychosomatic reaction. My hypersensitive nerves, like microscopic drama queens, take little provoking to start screaming DANGER, FIRE – even when there’s nothing but the thought of smoke.
I leave. I know the only other option is the eye-wateringly expensive organic cotton pads I can buy online. I suppose it’s time to stock up.
“The pelvis is like an apartment building,” says my physiotherapist cheerfully two days later. She’s brandishing a full-size silicone replica, complete with hymen (is the pelvis a virgin? I wonder nonsensically and slightly hysterically).
This is my second appointment with Sharon Wilson, who’s spent 18 years helping people with the various causes and symptoms of pelvic pain. In that time, she reckons she’s seen more than 8000 vaginas.
“The rest of the body is more like rows of houses on streets,” says Sharon, popping the disembodied pelvis on her desk alongside what looks like a pharmacy’s worth of lubricants.
“If your left toe hurts, your nerves send a clear pain signal to your brain, and your brain knows exactly which toe hurts,” she explains. “The pelvis, though, has a bunch of major organs and muscles in close proximity, sharing ‘walls’ – just like apartments. If loud music is playing in one apartment – your uterus, your bladder, your intestines – that’s going to affect everyone else, even if the music isn’t coming from there. And on the way up, sometimes the nerves get confused, and the brain gets scrambled messages. It doesn’t know what’s hurting.”
That lines up with what numerous gynaecologists have told me, including the doctor I’d seen the previous month at Oxford Women’s Hospital in Christchurch. The one who’d talked me through the last thing I thought I’d ever consider. Surgery. On my vagina.
Dr Smart had confirmed my previous diagnosis: vestibulitis. A form of vulvodynia – pain of the vagina and vulva – that affects mainly the nerves in the skin at the entrance. The condition has, at this point, persisted for the better part of 15 years. In that time, I’ve tried every treatment: yoga, pelvic floor exercises, dilators, topical antidepressants and anaesthetics, counselling. All but one.
Because my pain is so localised, Dr Smart surmises that surgery to remove the skin where the DANGER nerves live would be relatively straightforward. The vestibulectomy is only a day stay – arrive in the morning, submit my body to the scalpel, walk out (slowly) that night. Dr Smart reports minimal scarring and a 9 out of 10 success rate. After 15 years of pain, it seems too simple… and far, far too much.
I opt for more physio.
“Sometimes it doesn’t matter if the music has been turned off,” Sharon tells me, jolting me back into the room. She’s still explaining how my nervous system got so switched up and confused. “Or even if it never started. The signals can go anyway.”
In my case, the catalyst could be anything: bodywash, non-cotton pads or underwear, thrush, the treatments for thrush, sex, the wrong kind of lube. Sharon shows me the safest options she’s discovered in her years doing this work, including organic pads.
“Vaginas are their own sensitive ecosystems,” she says. ‘They’re acidic, they contain specific levels of specific flora. Many of the products we use contain things that can disturb that – perfumes, dyes, bleach, chlorine, parabens.”
I wince and reflexively cross my legs in defence.
During my third appointment, I lie on my side while Sharon conducts myofascial release. Her fingers unerringly find the tight, tender points in my adductor muscles and something she calls the obturator internus. I tell her it sounds like a Transformer, and she laughs and says yes, it’s right next door to Optimus Prime.
She warns me she’s about to “hoon her fingers right down next to my girly bits”.
The next day, I walk like I’ve been riding a horse for three days straight.
I’m ready to step it up, though. There’s only so much work Sharon can do from the outside. We already know I have excellent control of my pelvic floor; it’s time to test that out.
If you’ve never laughed while a physiotherapist has their fingers inside your vagina and been praised for how your pelvis felt, I can tell you you haven’t lived.
At the end of the session, Sharon kindly asks me how I’m feeling about the vestibulectomy option. Given that so much of my pain is related to skin-level nerves, she’s unsure how much more relief the physio alone will provide.
My laughter has died. In my mind I see the irreversible scalpel.
I go home to think about it.
Meanwhile, my period starts. Armed with memories of the last expensive failure, I go online to look for Sharon’s recommended brand: Natracare.
It costs three times as much as what I’d been paying. I do some quick calculations. At $6-$9 for a package of 12-14 pads, plus $6 for liners, the products will cost me a minimum of $30 per month.
A dollar a day to keep the pain at bay.
According to the US’s National Vulvodynia Association, as many as 16% of women will suffer from some form of the condition during their lives. That number is probably conservative, as it’s an issue that many people will never talk about.
I would wager that a large chunk of the 16% need sanitary items that don’t cause more harm, and can’t afford them. Tampons and moon cups may be unusable. Cloth pads include the labour of finding undyed organic cotton, testing it out and sterilising it every month.
As with most conditions falling in the category of women’s health, vulvodynia and its causes and treatments have been under-researched for decades. It can happen as a result of injury, physical or emotional trauma, stress. It can have no discernible catalyst. It can be exacerbated by elements of daily life, or it can respond to nothing. It’s a ghost with a knife.
Sexism, patriarchal familial and medical structures, geography, religion and economics all impact diagnosis and treatment. In a society where women’s pain is still unheard and our place as a provider of sex and children is still reinforced, it’s no surprise the condition can cause fear, shame, and long-term silent distress.
During my teens and early 20s, I internalised the well-meaning misogynistic advice I received from friends and medical professionals.
“You’re just with the wrong person”
“You need to use more lube”
“You just need to relax’”
“… Maybe it’s just like that for women?”
For some years my mother worked at Paper Plus. Access to stacks of unsold Mills and Boon paperback romances was a perk of the job. I devoured them all.
What they taught me, other than the alarming notion that all women are attracted to domineering, emotionally scarred men, is that losing one’s virginity would be inevitably, horribly painful.
Hard to know if that early lesson contributed to my vagina’s tendency to shut up shop.
I had little to counteract it. Our sex education at my all-girls’ high school was rudimentary. A list of STIs and contraceptive options, topped off by the two things most likely to scare us into staying safely inside our uniforms until at least middle age: a sepia birthing video complete with endless screaming and 80s bush, and the Practical Test – in other words, could we roll a condom onto a wooden penis?
I could not. One girl refused to even look and excused herself to sit in the corridor. Another fainted. The whispered manic giggles of teenagers who’d probably never seen a penis IRL filled the PE room.
Armed with that vast amount of preparation, I sallied forth into sexual adulthood. Needless to say, it was far less satisfying than Mills and Boon had suggested. Luckily, it got a lot better.
Now, as I push the button on a bulk order of organic cotton, I suddenly recall the words of the gynaecologist who likened my vagina to an over-excited burglar alarm.
“Most alarms only go off when there’s an actual burglar,” she said. “Yours – it sees a leaf blowing by and thinks it’s time to send in the SWAT team.”
Suddenly, I find the image unbearably funny. Despite the complex context, the expense of organic products and specialists’ fees, the spectre of surgery and the years that led to here, I have to laugh. It’s one way of coping, and, according to Sharon, I’m good at it – or at least, my pelvic floor is.
I imagine calling noise control on the whole building. I mean… whoever asked for a leaf-detecting vagina?
I still don’t know if I’ll go through with the surgery. I’m not certain that the best response to a misbehaving burglar alarm is to remove it. In the meantime, I’ll stick with Sharon and her lab full of lube. I’d say there are worse places to be.