Vestibulodynia: The “Invisible” Health Problem Plaguing 1 in 6 Women
In October 2006, I was diagnosed with a chronic neurological syndrome, vestibulodynia, or ‘pain in and around the vestibule (or entrance) to the vagina’. My symptoms seemed easy enough: a dire burning stretching from my clitoris into my vagina, coupled with intense itching, easy bruising, discharge and – icky, this – sometimes blood after intercourse.
It was all a little odd. I wasn’t the kind of girl who normally had ‘sexual’ issues. I’d only had one yeast infection in my whole life, had never had any problems with sex and hadn’t changed anything in my lifestyle or diet to warrant such a bizarre onslaught of crotch pain. So it was a continual surprise whenever the doctors’ tests – ranging from herpes to pregnancy to mental acuity exams to measure my neuroses – came back negative.
Unable to wear pants, sit down for long periods or concentrate on anything beyond the throbbing of my sexual organs, I began to lose my mind. Thanks to some miraculous alignment in my universe, I discovered the one doctor in London who seemed to know what plagued me. Fiona Boag, at London’s Chelsea and Westminster Hospital, did nothing more than touch my vagina with a Q-tip in her medical examination, yet my howls of anguish confirmed her suspicions that it was vestibulodynia, and nothing else, that was wreaking such havoc on my body.
The year of pre-diagnosis was the worst of my life. I was juggling a work-all-hours job as an assistant documentary producer while fighting to maintain both my dignity and my sanity in the face of medical opposition. My doctors – I saw nine in all – grew tired of my constant visits and painted me as a hypochondriac, desperate for attention. They wrote me refillable prescriptions for anti-fungals and anti-bacterials, assuming that, if I did have anything in my vagina causing me pain, these meds would most likely get rid of it.
What they didn’t realise is that vestibulodynia is an incredibly common but underreported condition that affects 1 out of 6 women in the UK. The ‘true cause’ is yet unknown, but research is now suggesting that yeast infection medicines (including anti-fungals), the Pill, and anti-bacterials all play a part.
Vestibulodynia is more common than breast cancer (1 out of 9 get the latter in the UK), yet nearly no one has ever heard of it. Dr Boag suggested I join a support group, the Vulval Pain Society, but even she, bless her, sent me on my way with nothing but their brochure and some anti-depressants to numb the pain. I got home ready to tackle this problem head on, only to find that there was nearly no information available on the subject, be it academic or practical advice on how to live with the syndrome, deal with the syndrome, or cure the seemingly ‘incurable’ syndrome.
So I went into my own personal warrior mode. After trying out the conventional medicine given me and finding it to suck, I looked into alternative and holistic medicines instead, started therapy, learned relaxation techniques, saw an acupuncturist regularly and did a hell of a lot of energy work on my body. Then I wrote an article for the Times of London. It was, to the best of my knowledge, the first piece on the subject in the UK. The article drew comments from all over the world and served as a forum of advice and information for women as far afield as Minnesota to Bali. (The comments have unfortunately been disbanded since the Times reformatted its site).
Four years on, I’m now happy to say that awareness of vestibulodynia has grown exponentially, and that I, and many other women, have learned not only how to deal with and work through the pain, but have turned it into something transformative as well. Here’s to you, ladies.
From The Times, June 2, 2007