I would love for this article to be a love-letter to the NHS, but unfortunately, it is not. I recently requested a copy of my medical records from my old doctor’s surgery in North London. In my apartment in New York City, I opened the package and flipped through page after page of notes, going back years, and felt the rage roiling and flickering out from my stomach until it flooded to my fingertips, to the ends of my toes.
I had done my part: I had gone to the doctor, I had explained and wept and begged… and they had done nothing to help me. In fact, they had made my problem worse.
Meeting a man who was actually concerned about my enjoyment of sex and horrified at my casual admission that I had always experienced pain during intercourse, changed everything. I finally admitted it did actually hurt quite a lot and as such, I was kind of ‘meh’ about sex in general.
Suddenly that pain I’d always explained away, the pain I had lain back and ignored, was blaring like a siren in my head. Sex became a terrifying prospect, coinciding perfectly with finally being with a man I actually wanted to have sex with. It was a perfect vaginal storm.
Have you ever spoken honestly to another woman about sex? We rarely get past the bravado or the drunken horror stories that we still, somehow, present as freewheeling uninhibited sexcapades.
The day I opened up about my experiencing pain during sex was the day women started opening up to me; started to approach me with their own stories.
And the things they told me broke my heart, because they were all things that I have experienced and thought – and despite everything, in my darker hours sometimes still think: sex is everywhere, sex sells everything, and everyone is having it 24 hours a day. If you aren’t then you must be frigid. You must be broken. Wrong.
I have felt less: less of a woman, less of a person. I have thought about the children I want to have one day and wondered how that could possibly happen. Even if I could have sex – if I wanted it, if it didn’t feel like razor wire inside and out – I begin to feel as though my body would fail.
After all, isn’t it failing at even the most basic of requirements, right now? Surely becoming pregnant and carrying a healthy child to term would be beyond its capabilities.
I don’t trust my body. I don’t trust my mind either, because I am told over and over again that there is nothing physically wrong with me. (If it isn’t immediately obvious, this is really a shitty place to be.)
In London I begged my GP to send me to an actual gynaecologist, which took months of asking and even more months on waiting lists. I came away with the official diagnosis that I “just needed to be more confident, really!”
I was too shocked to respond to my gently smiling doctor. I wanted to get out of there, I wanted to run, I wanted to punch her. I walked out with a quiet, heavy devastation settled firmly about my shoulders.
A few months later I moved to America, to travel around the country for more than 16 months with my now fiancé, who is a touring musician.
Take a girl with anxiety, a broken vagina and a plummeting libido and put her thousands of miles away from her friends, family and job, and see how she does. I fell apart in exaggerated slow-motion, but there was no one around to see it but my long-suffering partner.
Before I moved to America we hadn’t spent more than two weeks in a row together, and I was still trying desperately to hide the extent of my craziness from him, which is hard when you’re living in an apartment in Bumfuck, Illinois that’s barely bigger than the suitcase you’re never in one place long enough to unpack.
But in America, finally, I found the help I needed. I didn’t pay through the nose for it; I would describe it more as ‘opening my veins and being drained dry’.
Paying for healthcare still feels like a slap in the face for me, but quite honestly it was worth every penny. When you pay for something you are allowed to leave a review, which kind of compels the person you’re paying to do a good job.
I saw a therapist specialising in sexual issues, who referred me to a gynaecologist who actually wrote the book – Healing Painful Sex – on my problem.
In October 2016, I went for my first appointment. I dressed in my witchiest black for confidence. Of course I cried the whole way through the appointment (Weeping Witch is totally my go-to look), but after a trauma-free physical examination (who knew that was possible?) I was diagnosed with primary provoked vestibulodynia, a condition in which the skin around the entrance to the vagina (called the vestibule, as if it’s a cloakroom or a hallway with a welcome mat and a place to wipe your feet) is inflamed and sore.
This can be due to nerve, skin or muscle problems. It’s a fairly common condition, and my winding road to diagnosis is shockingly common too. When I read my gynaecologist’s book I discovered most women see an average of six doctors before they find one willing to take their pain seriously.
In Healing Painful Sex, there is an entire chapter covering How to Deal with Difficult Doctors, about gynaecologists who make a patient worse by essentially gaslighting them into thinking that they’re imagining the whole thing.
The blanket term ‘pelvic pain’, which is a much more dinner party-friendly way to describe your hurty vagina should you wish to bring it up at a dinner party, covers a mind-bogglingly wide array of conditions.
I learned some women experience pain so bad in their clitoris that they can’t sit down without a bag of ice between their legs. There is another startling chapter on suicide, and suicidal feelings. This is some serious shit, and I felt wonderful reading it. I cried, because that’s kind of my schtick if you haven’t noticed by now, and because there is a glimmer of hope – faint and flickering, but something to walk towards.
I now have a doctor, a therapist, and a physical therapist that I see once a week, a team of kick-arse ladies who are on my side. They let me sit in their offices for hours at time if I need to, and let me cry without judgment, and correct me gently when I tell them what a failure of a woman I feel.
They have never once told me, as more than one British doctor has, that I should “just drink a bottle of wine before sex”. I don’t know what I’d do without them. I don’t know what I’d do if I was still in the UK, asking the NHS for help.
It’s easy as a Brit to underestimate or completely ignore the emotional and psychological sides of chronic illness. I have been warned that if I continue on my path of anxiety with no way to release the stress and the tension, no amount of medication and physical therapy will help me.
I have to reprogram my brain to want sex, my muscles to ease, my nerves to not send ‘pain pain PAIN!’ signals every time I am touched.
It seems like a mammoth task, and sometimes I’m not certain I can do it. I have had to come to terms with the thought that while there are plenty of options to try (including some pretty scary-sounding surgery) I may never be completely pain-free. It’s about managing it.
Here in America the idea of something being ‘all in your head’ is not the end of a conversation but the beginning. You cannot just think yourself better. The psychological side is not insignificant, and something that begins in your head can have physiological impact on your body with very real pain. But without help of structure of guidance, just thinking happy thoughts will get you nowhere.
Yes, my pain is not helped by anxiety or stress, but that in itself is nothing to be ashamed of, and I now have a regime that includes yoga, stretching, mindfulness, therapy, and medication with doctor’s appointments.
There is woefully little research when it comes to female anatomy, because the very words ‘female orgasm’ or ‘female pleasure’ in research proposals or papers has, for years been enough to immediately disqualify it from any funding.
It is not seen as important by the either the medical community or the wider world. After all, a female orgasm is not vital to reproductive sex.
As women we’re supposed to want sex, but enjoying it is another matter. It never occurred to me that I should be disappointed, sad or angry when a man I was having sex with didn’t bother asking what I liked, or if what he was doing felt good, or was even OK with me.
Which brings me back to the talking thing. Women need to talk to each other, confide, honestly, about this stuff. There are more than 200,000 documented cases of vulvar pain each year in the USA alone. Many women will be fobbed off by doctors, or will be too ashamed to go and see one.
So, so many women will experience some kind of pelvic pain at some point in their life. It can arrive with little warning and disappear as quickly, or remain for years. Sometimes it will have little obvious cause. For instance, did you know that women who have Caesarean sections will often experience pain during sex afterwards, despite the fact they didn’t have a vaginal birth?
Do you really know what is going on down there in your hoo-hah? Do you know what all the bits and bobs are? The ones you can’t see without a hand mirror and a stretch? Do you know that what we call a vagina is actually just one bit of your vulva?
It’s not easy writing this. I really hope that my dad never reads it. But this is something that feels more important to me than my personal privacy or pride.
I don’t want any woman to feel the way I have felt – unheard, ignored, defective. There is nothing so wonderful in this world as feeling understood. God knows there are enough articles in trashy women’s magazines about How To Give The Perfect Blowjob! Why aren’t we talking about women’s sexual health and pleasure in an honest way, from our very first sex education lesson in school?
The more I open up about this, the more I talk about it, the more “Me too!”s I hear in return.
Living through something like this can be incredibly depressing and isolating, and yet, out there are a million other women walking around under that same awful, shameful raincloud.
So, I encourage you ladies to speak to your friends about sex in an honest way. And if you’re experiencing anything like that which I’ve talked about here, please, please, please: keep going. Keep fighting for the attention, diagnosis and treatment options that you deserve. You are not alone, broken, or wrong, and I, for one, hear you.
Originally published in Standard Issue - link
Illustration by me.