The other day, I decided to give my pain a name.
"I'm going to call her Doris," I texted to my boyfriend. "She makes me feel like an old lady."
"Very good, dear," he replied, sticking to the old-lady theme. "I hope Doris buggers off very soon!"
After almost a decade, I was fed up with saying the words pelvic pain. Too alliterative, too repetitive, too vague. I wanted to yawn when I said it.
"Sorry, I can't, I've got pelvic pain" or "Sorry, it will take twenty minutes to walk ten blocks" or "Can we get off this bus, as the jolt of the wheels is fricking un-pleas-ant."
I guess it's a form of chronic pain, yet I don't regard myself as one of those people, with one of those things. If you clock up the minutes and hours, I don't even have it most of the time.
My school friends tell me Doris first showed up when I had to leave the Valentine's disco early. "My vagina is sore," I told them, and hobbled home. Later, at fourteen, lying in bed next to a friend, she flung her arm out and mistakenly whacked me in the vagina. I couldn't sit down without a grimace for two days.
But the real "Uh-oh" moment was at nineteen, when I was home from university for the Christmas holidays. I had lost my virginity the week before to a student who dressed in a gilet, and as he went down on me, I held on to the headboard with both hands, writhing with discomfort (he thought with delight) as his tongue darted at my clitoris.
A week later, while jogging, the pain arrived. BAM. As if someone were taking a small but pointy knife to my genitals. The vaginal lips felt inflamed and complained at being touched, wiped with toilet roll, and rubbed against tight jeans. When I moved, it hurt. The spasms and pain only stopped when I was totally still.
A blip, I thought. But the next day, I limped home from my jog, defeated.
Cue Doris and her frequent, doddering cameos in the film of my life. Although I imagine she is much older than me, she is spritely and persistent and can nag at me for — her longest recorded stretch, this June — 21 consecutive days.
Doris looks wistfully at fellow elderly citizens in electric wheelchairs. She is grumpy. She complains at how quickly those damn traffic lights at the end of my street change from "walk" to "don't walk," leaving her stranded halfway across. Doris has kindly contributed to my temperamental libido, and my near inability to orgasm during intercourse. (Just as well Doris didn't totter into my life much earlier on, so I had time to figure out how to do it just fine on my own.)
Doris has illustrated how pain links your whole body together, from your legs, pelvis, and hips to your stomach muscles and spine, all the way to your neck. The vagina and pelvis are at the center of all of it, at the center of what makes you feel young, womanly, and human.
What does my pain feel like? It alternates: from a painful stabbing, to an electric-shock feeling, to a tearing across my pubic hair as if someone is pulling a Velcro tab on a sneaker. Sometimes it's just a tightness, a warning sign that pain may come, or it may not. At that point, it's best to ward it off with a pillow under my knees, focusing on deep-belly breathing and watching repeats of Grace and Frankie.
It took years to understand why I felt the pain, by process of elimination. It wasn't an STD, an infection, or anything life-threatening. An English gynecologist suggested I had vulvodynia and prescribed antidepressants. Charlotte in Sex and the City is diagnosed with the same condition, incorrectly described as "stinging, burning, itching."
"Vulvowhatiya?" Carrie asks. They joke about depressed vaginas and vagina-journaling. I didn't take the pills, although I did keep that bloody journal — marking down a number from a scale of one to ten for pain each day — and I'm sure it was fascinating.
Doris is not only a grumbling battle ax but also the voice of reason, telling me I need to stop, slow down, take care of myself.
The National Vulvodynia Association reckons women see seven doctors on average until they are diagnosed. Since late 2007, I have seen four and counting.
During a particularly frustrating, painful period, when I was teaching English to French teenagers in Lyon, I tried to come up with an alternative diagnosis. It was "cancer" at every Google search, or endless, weepy forums where people were praying for one another and advising giving up soy products.
A French doctor questioned my hygiene and told me to wash more. I was indignant. Je me lave, I told him. But for that year, I had the most pristine vagina anyone has ever known. He also gave me vaginal suppositories. They were white and messy and useless.
A third doctor insisted the issue was my pudendal nerve. She showed me a machine that looked like it was once used to track submarine coordinates. She then inserted several needles into my vagina and told me to "Serre [squeeze], ma chérie, serre" as I gripped onto my friend's hand. (Thank you, friend, I will never forget it.) The result, the doctor claimed, a squiggly line on paper, proved her theory right. I would need invasive surgery. No fucking way. I still have the letter at home.
A fourth doctor. For a gynecologist, his hands were rough, and he yanked me up from the bed by my wrist afterward, raised my dress, and started touching my breasts.
"What is the link with—" I tried to ask in French.
"I'm not a nymphomaniac," he replied. For anyone who is interested, that's Je ne suis pas un nympho.
By 2010, I had discovered a physiotherapist near London who had expertise in pelvic pain., I was an Erasmus student in Germany. I booked a flight. As soon as the physiotherapist pressed gently on my pubic bone, I winced. To this day, come near my pubic bone and I jump like a cat spotting a snake pop out of a basket. In Gillian Flynn's Gone Girl, the character Amy says something about "wanting to punch another woman in the vagina." I slammed the book shut and threw it against the wall.
The physio's understanding and sympathy were game-changers. I cried explosive, bottled-up tears of fear and frustration. But I was also immensely relieved.
She showed me on a dummy skeleton how the two bones that formed a cradle shape of my pelvis were looser than other people's, and they moved more. Symphysis pubis dysfunction. She showed me exercises, which I am very undisciplined at doing. She also gave me an elastic serola belt, which you wrap between your pelvis and hip bones to reduce friction. Like a naughty teenager, I try not to wear it. And I have this miraculous glass instrument called a wand — or pelvic-floor massage tool — that you lube up, slip inside you, and use to stretch out your pelvic muscle. It's a tough old bird. I have to push until my fingers are sore, usually while watching The Thick of It. Laughing helps when inserting glass instruments.
I tried to continue this work with other physiotherapists closer to my parents' house. One of them kneaded my inner thighs like dough until I bruised. Another one in London had me lie down, stood at my feet, and yanked one of my ankles toward him, as if to pull me back into alignment. "Well?" he asked. His work was done.
There is, I discovered, a shocking lack of research around pelvic-floor dysfunction and vulvodynia and symphysis pubis dysfunction and anything like that. My physiotherapist's optimism has kept me away from injections and invasive surgery.
At work, I understandably don't like to shout about sore vaginas. I tell people, "Go ahead without me, I've pulled a muscle in my leg." Well, Doris says, the jig is up. Beeyatch.
I've developed good lifestyle habits, and none of them are on Instagram. Wearing proper shoes. Sitting in comfortable chairs. Learning to breathe properly (deeply). Learning to poo properly (exhale and push down). Accepting that it's OK if I don't want to use tampons or take the pill (quite enough going on down there already). Embracing comfy, cotton panties (I think thongs are gross anyway). Touching yourself with your hands, not even in a sexual way, but just to feel yourself with your own fingertips and learn not to be afraid of your body.
My mum often asks me, how did the pain start, and why? This condition is something that, according to my physiotherapist, typically affects athletes or pregnant women. (I was amused to see a Mumsnet forum user describe it as KNUF — knitting needle up fanjo.) I am neither pregnant nor an athlete. But as a teenager, I exercised compulsively and probably was, with hindsight, on the verge of an eating disorder. Perhaps I was being punished for five or six days a week of swimming, jogging, spinning, and running around my room in endless circles, sweating it out to Michelle Branch.
I will probably never know the "why." I will probably always be the woman who automatically crosses her legs and frowns, uncrosses them again, and plants her feet firmly on the floor. I will probably never run a marathon, even if I have run a 10k and hiked to the base camp of Annapurna in Nepal. It will never stop me from doing something I want to do, however. Doris is not only a grumbling battle ax but also the voice of reason, telling me I need to stop, slow down, take care of myself.
So, fuck you and thank you, Doris. I am still hopeful she will die before I do. She has forced me to look at my vagina in a new way (perhaps not literally) and to savor those days, weeks, and even one blissful year in New York City, where I could run across Sixth Avenue, pain-free, care-free, with a spring in my step.
Rachael Revesz is a writer and journalist working on her first novel.