My former job, on a glossy magazine in the Noughties, used to involve endless talk about sex and pleasure. I’d go into the editor’s office and she’d say something like, “How’s your love life?” And then, as a by-the-by, “Oh, and have you got any story ideas?” 

It was almost part of the job to be sexually playful: going to parties with famous people, being “naughty”, coming back with a good tale the next day that might become a trend in the magazine. Being one of the few bisexuals on the staff, I was counted on to come up with some extra spicy stories.

But three years into the job, my world started to collapse. I was trying to sound chirpy when the editor asked if I was feeling myself. I shrugged and said I was fine, but in fact I’d spent the previous day in hospital, lying on my back with my legs in the air as the doctor used a scalpel to carve a triangle of skin out of my perineum, the sensitive area between your anus and your vagina.

They’d told me it was just a “procedure” which hadn’t sounded that bad. But I cried, not just for the pain but for the sense of defeat. Once I was a sexual adventurer. Now I felt like a sexual cripple. 

It was 2006 and for the past year I’d had pain in my vulva. I’d finessed the terms for the types of pain I was experiencing so doctors would get a good picture: burning, stabbing, throbbing, electrical, shooting. STDs and cervical cancer had been ruled out and, nine months in, I’d finally got a diagnosis: vulvodynia. 

But as one of my less sympathetic early (female) GPs had sneered: “All it means is ‘pain of the vulva!’” There was a word for it, but nobody seemed to know what to do about it – if they even believed the pain was as you described.

Officially, vulvodynia is a complex pain syndrome of the female genitals where infection, skin disease, endometriosis, cystitis and IBS have been excluded. There are different nuances of the condition, from provoked vestibulodynia (PVD) where pain comes from physical contact such as sexual intercourse, to generalised vulvodynia (GV) where pain is relatively constant, but there can be some periods of symptom relief.

My latest treatment plan was this doctor with the scalpel. Yet hacking a piece out of my vulva to see if the pain was linked to a skin condition seemed akin to 18th-century leech therapy for gout. Was this all they could come up with? 

Until I became unwell with an “embarrassing” female illness, I didn’t realise the sexism that prevails in the medical industry. David Nunns, a fellow of the Royal College of Obstetricians and Gynaecologists, admits “there is still an imbalance in how medical research is prioritised”. In fact, gender bias in medical research is everywhere. 

PubMed, the medical search engine, showed that in 2018 there were 393 clinical trials on dyspareunia or the severe pain some women experience during penetrative sex. On male erectile dysfunction there were 1,954. Meanwhile, nearly all medical research, especially drug research, is performed on male subjects (because women’s hormones are considered a “confounding variable”) with little attention paid to the biological differences between the sexes. 

Women have hormonal to acupuncture. I tried cutting out sugar and alcohol and bikini waxes. I chose new underwear and tried “transformational breathing”, a goddess workshop in Wales and an ayahuasca “plant medicine” ceremony in the Pyrenees.

In 2008, it became so bad that I was put on an anti-convulsant drug called Gabapentin which tells your brain the pain you are feeling is not actually pain. It worked, but I lost 30% of my orgasm. This may seem like a small thing, but it wasn’t. There’s an idea female pleasure is somehow trivial or an indulgence (whereas solving male erectile dysfunction isn’t). I became desperate at the prospect of a life of no pleasure.

By 2012, I was ready to come off the drugs. The “hippie stuff” seemed to have helped the most. As I stopped taking Gabapentin, it felt as though my body was coming back to life – as if a coat of varnish was melting and I could start to feel naked again. Yet even two years off the drug, I found it hard to orgasm properly. 

In 2015, I decided to drive across America to meet all the famous sex-positive feminists of the Seventies and Eighties. The worst of the pain had stopped, (although lots of penetrative sex was, and still is, uncomfortable) but I still felt in need of healing. 

My ultimate mentor was the rock ’n’ roll sex-positive legend, Betty Dodson, 89, who lives in New York. She had just restarted the “masturbation masterclasses” she created in the Seventies because she believes internet-age women are still at sea about their sexuality. I learned masturbation is the foundation of every woman’s sexuality and learning to love your body in a shame-free way brings you power and confidence.

Researching the vulvodynia world for this story so many years after my pain began was strange. In some ways, not much had changed. Julie Holland, psychopharmacologist, psychiatrist and author of Moody Bitches says: “Women are still, very simply, second-class citizens in the world of medicine. Until recently, surgeons knew much less about pelvic anatomy for women than for men. This has translated into thousands of hysterectomies with avoidable complications.”

In her 2017 book Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, Maya Dusenbery shows how women are still living with the repercussions of the ‘hysteria’ label doctors gave us in the 19th century. 

We are still regarded as unreliable narrators and Dusenbury points to studies showing women with abdominal pain wait in A&E for 65 minutes compared with 49 minutes for men. While problems still exist, some myths are being dispelled. The Wonder Down Under: A User’s Guide To The Vagina by Ellen Støkken Dahl and Nina Brochmann reveals a 2011 study on the link between repeated yeast infections and vulvodynia was done, wait for it… on mice. 

However, I also found the landscape much more hopeful than when I was first diagnosed. We now have social media and YouTube channels with pelvic health specialists such as Amy Stein and Stephanie Prendergast offering hopeful suggestions. Kay Thomas is a trustee of the UK vulval pain society who also runs the more informal vulval pain support group in North London I used to go to. She told me that today there is an increasing focus on a multidisciplinary approach to women with sexual pain using sexual therapists, physiotherapists and pain management specialists.

To speed up this medical #MeToo moment, specifically in the area of “embarrassing” conditions, Nunns believes we need to change what medical students study. Basic medical training in the UK is currently around five years; a specialism in obstetrics and gynaecology is a further seven. “Much of the time is focused on general gynaecology and obstetrics problems which don’t include sexuality,” he admits.

Boyle suggests the “paucity of interest and understanding in disorders of the vulva and sexual pain” is often due to the shame doctors feel around sex. She points out there is a module which gynaecology trainees in the UK can take. “But it’s not one of the more ‘sexy’ sub-specialty areas because it involves few surgeries and lots of conversations about embarrassing problems that trainees feel ill-equipped to deal with.” 

I would go further and add that the concept of pleasure needs to enter the pain game. An actor friend of mine often does gynaecological role-playing sessions for the NHS. When she recently had to play a woman with vulva cancer, she reported that out of 46 students, only one asked about pleasure. 

“Everything was about reproductive issues,” she said. Boyle says it would be useful for students to study what a sexually happy woman looks like. “It is very difficult to identify when something may be a departure from the norm if the norm is not discussed.” She advises any woman with persistent vulval pain “to ask her GP to refer her to a specialist vulval clinic”.

Some sufferers, infuriated with the dismissive attitudes of doctors, have created businesses to help themselves and others. Tara Langdale-Schmidt had a “light bulb moment” and formed a company making vaginal dilators (vuvatech.com) with magnets which have allowed her to “finally enjoy sex without pain”. Emily Sauer, when told by her doctor to “drink a glass of wine and relax” when she told him she found sex painful, created the Ohnut, an “intimate wearable” for men that allows you to customise the depth of penetration (ohnut.co).

Sheren Gaulbert, who had so much vulval pain she was “unable to walk without being in agony”, says she healed herself through cognitive hypnotherapy. “With persistent pain, there are both sensory and emotional components, and it can be important to work on both.” She has now retrained and set up her own business called The Ultimate You. 

My original shoulder-to-cry-on is Thomas, who has suffered from vulval pain for 26 years. On bad weeks, her vulva swells and it feels “like a pufferfish between my legs”. 

But women are finally getting vocal about this most taboo of medical conditions. We must keep sharing these dire stories, we must keep bugging our doctors and we must stop being embarrassed by mention of our body parts. Thomas was recently talking to a young woman about fundraising around vulval issues and the woman snapped, “Well, you wouldn’t want to run the London Marathon with ‘Vulval Pain Society’ on your T-shirt, would you?”

“I suppose she was too young to remember the days when breast cancer was viewed by women as shameful and referred to as ‘The Big C’,” Thomas reflected.

Thankfully, I’m now years away from sneering doctors and back in touch with my body. Now for everyone else suffering quietly, it’s time to take on ‘The Big V’.

Sex Drive: On The Road To A Pleasure Revolution by Stephanie Theobald (£16.99, Unbound) 

How to speak to your doctor about vulval pain 

David Nunns, consultant gynaecological oncologist at Nottingham University Hospital, shares his tips

Start with your GP: “If you have vulval pain, the first port of call should always be your GP. You can expect them to ask for a detailed history of the problem and do an examination to check there is no skin disease, dermatitis or splits and cuts. A diagnosis following this is the important part, but sometimes women are given an antifungal cream and not much else. If this happens you need to ask for a second opinion.”

Do your own research: “Research has shown that women have a better awareness of vulvodynia these days because they can type in “vulval pain” on the internet and it will come up. Doing your homework and visiting your GP with as much information as possible can be helpful. I would recommend visiting vulvalpainsociety.org.”

Know the right questions: “If your GP is unsure, suggest a referral to a specialist. This would either be a dermatologist or gynaecologist. Ask directly: ‘Do you think this could be vulvodynia? Are you confident there is nothing wrong with the skin?’”

Avoid irritants: “Lots of women – out of frustration with vulvodynia – will put antiseptic creams, steroid creams and wet wipes on the skin. You should avoid these because they’re irritants. Instead, use bland emollient creams like E45 or Cetraben which soothe the skin. They help to create a protective layer.” 

Images: Unsplash, Pexels