Mein Schmerz hat einen Namen
Emotion Verlag (German magazine) April 2018.
The English version is below:
'My pain has a name'
My pain-free stint in New York City – working as a reporter during the presidential election – convinced me that my pelvic pain had been cured.
After 10 years, this was an apparent miracle. The cure was in the New York air! I thought it might be due to the extreme temperatures: the winter cold numbing my creaking hip bones and the summer heat melting my body into frictionless jelly. I was also having a fabulous time, and I wondered if the experience itself was simply overpowering the frustratingly illogical and unreasonable condition that is pelvic pain. It is a condition that I sometimes believe is all in my head, so why shouldn’t it just disappear?
I say my 18 months there were pain free but that is not entirely true. There had just been one day – one evening – of pain that had taken me by surprise. As I walked up and down Tenth Avenue, trying to track down my friends in a bar on a Friday night, pain started to shoot around inside my vagina. I needed a seat, and quick. My friend text me to say it had been too loud in the first bar and they had moved onto the next. When I finally got to the right place, I edged myself onto a high stool and welded my thighs to the wood, sighing relief. The next morning the discomfort had worn off and I thought it could have been a bad dream.
In March I decided to move back to the London office and I was excited to move into a flat with my boyfriend. It turned out to be a bittersweet homecoming: not only was I reunited with my boyfriend but also with Doris – the “old lady” name I’ve given to my pelvic pain. Doris harassed and tormented me for three weeks straight, the longest consecutive stretch yet. She stamped on my pubic bone and made me almost hysterical in the run-up to a routine vaginal colposcopy in hospital, which luckily was no worse than a smear and Doris behaved during the appointment. The doctor gave me the all-clear and my boyfriend and I went for eggs.
Doris, the gripe-bag, extends from my legs and my pelvis to my hips and spine, all radiating from an intense pain in the vagina. The general rule dictates that if I don’t move, there is no pain. But I would give £100 to anyone who can move their body without using their legs, pelvis, hip or spine.
Not moving, per se, can shrink your world somewhat. Forget coughing, sneezing, or even twisting towards the toilet roll without pain. Forget sex. Forget masturbation. Forget even thinking about sex or masturbation. Forget a comfy, low sofa that doesn’t have solid arms on which to leverage yourself back up. Forget tight jeans. No, forget trousers. Forget underwear at all. Forget even placing a blanket over your pubic bone, which feels like a hot tennis ball ready to explode at the slightest contact.
Going to work can be another puzzle to master. Try dawdling along a busy street, hesitating on the stairs down to the tube or navigating a wide, open-plan office floor surrounded by impatient, able-bodied people. It will only be those hawk-eyed colleagues who notice when I take a long time to walk to the toilets, and that I sit down in my swivel chair with the stiff grace of a Victorian lady in a hoop skirt. I have uttered stock phrases countless times, such as “I’ll catch up with you”, or, “I’ll see you down there”, and there are colleagues who must be wondering why I seem to always “pull a leg muscle at the gym”. Better saying that, surely, than telling Margaret from accounts that I have a red-hot knife poking into my vagina.
I’ve also tried many times to describe the pain. The warning sign is the odd snapping twinge when I roll over in bed, or a dull ache in my pelvis area that is relieved by placing a pillow between or under my knees. Then there is the ripping sensation across my pubic hair like someone is pulling a Velcro tab off a sneaker. At its worst, it feels like a knife or knitting needle, stabbing upwards. It can hurt even when I don’t move and can wake me up at night. That is rare, and it sets my heartbeat racing because that’s not something I can control.
After a decade of getting to know Doris, I can tell you she is a wily woman. Always spicing it up. The latest development, which I think must be related, is a numb, tingly feeling in my right thigh. She can also disappear, without explanation. No note saying why or where or when she is coming back.
Once, after giving me aggro for seven days, I took a bath and she vanished as soon as I had pulled myself out of the tub. I was able to wiggle into my new black, tight, patterned trousers and party the night away. Maybe Doris wanted to enjoy her weekend too. But hot baths, I later discovered, were not the antidote. Neither is the hot or cold weather. So far, the only reliable antidote is patience and optimism. (And maybe also one of those hover boards – that would save me from suffering vibrating engines on buses and bracing myself as taxis race over speed bumps.)
So what is this pain? And what causes it? Like many women, I spent years eliminating other causes like STIs, cancer, or anything else life-threatening before going to physiotherapy. I trawled through depressing medical forums, researching research that wasn’t yet there. This is the case with many women-associated conditions like endometriosis or vulvodynia – although of course men get pelvic pain too – and these conditions remain chronically underfunded.
I’ve had at least two physiotherapists who prodded at my thighs and ankles like they were discovering a cave woman in a block of ice. My determination to find an expert was unrivaled in any other area of my life. The third physio, a woman who specialises in the pelvis, was a life changer. She explained my hip bones are looser than most people, and their excessive movement causes friction. Pregnant people and athletes are the most common victims, and asides from compulsively exercising as a teenager, I am no athlete, however hard I try at my British Military Fitness class. But as soon as she pressed on my pubic bone and I cried out, she had discovered more about what was wrong than the doctor who said I didn’t wash enough, the doctor who thought I had a blocked nerve and the doctor who prescribed me anti-depressants.
Her sports injury-style massages work wonders. She also showed me how to lube up a glass instrument called a wand, slip it inside my vagina and stretch out my pelvic muscle. It sounds nasty, but is no worse than slipping in a tampon. I work the wand until my fingers are red and sore – the pelvic muscle is incredibly strong. No wonder Doris is such a tough old bird.
I also have a set of back stretches that I’ve named my “get out of jail free” exercises, which I do whenever I start to get the warning signs. My elastic Serola belt can be strapped on between my hips and my pelvic bones to “keep me together” when I move, but it gives me god-awful muffin top. A pack of vaginal dilators lie unopened in my bedside drawer. Maybe one day I’ll take them out the packaging. My physio is positive I can live without pain, but until I am religious about those exercises I will never know.
While I am sometimes tempted to get a scan of my pelvis, I know I would refuse invasive surgery. For me, it’s too much of a gamble, especially when I spend less time without pain than with it.
Instead, my coping strategy is to breathe deeply and not panic. I have hobbled around enough places to know it won’t kill me. Focus on the basics. Take it easy, inform friends of how I’m feeling when I see them and change plans if they don’t suit me. I have no choice but to put myself first, and that can’t always be a bad thing.
New York was fabulous for many reasons, I know now, but the most amazing thing was living without pain in the greatest city of the world. I lost 17 pounds. I could skip across the West Village, cross my legs in a café on the Lower East Side and, for some reason, jog across the Williamsburg Bridge at 6am with my local running group. It felt, at the beginning of my stay there, like I was out of prison. The world really was there for the taking. And that was an incredible feeling.