S’s experience with vulvar vestibulitis – which makes penetrative sex painful – highlighted the phallocentric medical establishment and limited definitions of sex

For almost 10 years I have suffered from a form of vulvodynia (vulval pain) known as vulvar vestibulitis, which, although it has made perhaps two brief forays into the media in that time, seems generally unknown except to those who suffer from it. Briefly, it has no known definite cause or cure and the symptoms are simply excruciating spots of soreness just inside the entrance to the vagina (making sexual intercourse, in my case, utterly impossible). This physiological (not psychosomatic – more on that in a moment) condition has had a fairly devastating effect on my sexual identity, marital relationship and general well-being, but it has also brought some clarity to my thinking about female (and indeed male) sexuality, and the prevailing societal assumptions of most healthcare providers. Essentially I would argue that the attitudes of healthcare providers to this type of condition are often phallocentric and negligent of female care. In my case I firmly believe my condition could have been treated successfully, had it been diagnosed immediately, treated as a serious condition and free from the obsessive focus on penetrative sexuality.

My first reaction when this problem started was utter terror and shame and fear, because I had no idea what the hell was wrong with me. I was 19 and only a few months into a still developing sexual relationship with my (now) husband and – despite having had very good sex education in terms of contraception and sexually transmitted diseases – was totally clueless about any of the other myriad problems that affect women in their sexual health. Why are students not offered this kind of information as part of our education system? It’s almost as though as long as you are pregnancy and disease free, nothing else – such as enjoyment or comfort – matters. I worry that we fail spectacularly to provide young men and women with the knowledge and understanding of sexual issues that most of them will encounter. Indeed, of the many, many GPs that I saw, hardly any of them seemed aware of vulvar vestibulitis, and I ended up educating them! If healthcare professionals take so little interest in women’s sexual health (and this is not a rare condition by any means), what does this say about society’s priorities?

I resented the implication that I was somehow an over-emotional hysteric who was causing this problem herself. As though I was too stupid to know my own body and was unable to comment on even the most basic symptoms

The first doctor I saw was lovely and sympathetic, but she was a bit clueless – seemingly stumped after we’d eradicated any possibility of thrush/chlymadia etc, she referred me to a ‘specialist’ GP. This doctor had an exceptionally cold personality and treated me as though I were an idiot (despite the fact I was a student at one of the top universities in the country and by no means unintelligent). She gave me a rough internal examination causing me extreme pain and then said, “There, you’re tightening your muscles. You’re doing that. You’re doing it yourself.” She was hurting me so much that I cried out and asked her to stop. Afterwards I actually felt like I had undergone some kind of assault. I then sat at her desk in floods of tears insisting that I was not causing the pain myself and that it wasn’t simply psychosomatic. Her response was, “You can’t sit there in floods of tears and tell me there isn’t a psychological cause here.” Now I think: what a fucking idiot that she couldn’t even distinguish between cause and effect, but at the time I was devastated. As much as the pain she caused, I resented the implication that I was somehow an over-emotional hysteric who was causing this problem herself. As though I was too stupid to know my own body and was unable to comment on even the most basic symptoms.

I am sorry to say that I met this kind of response in other doctors, who seemed remarkably unperturbed and told me it would probably go away. None of them seemed interested or indeed had any tools at their disposal for helping me cope with the severe emotional and psychological trauma this condition was causing me. I am convinced that a young man of my age, complaining of serious sexual dysfunction and pain, would not have been treated in the same way. Firstly because in an otherwise healthy young male, loss of sexual function would rightly be seen as devastating (whereas for me it was treated as a mild difficulty), and furthermore because I do not think these doctors would assume a man was being ‘over-emotional’ or was suffering from a psychological problem rather than a physical one. I have come across several research papers on this condition which state that it is more likely to affect women who are ‘highly sensitive’, although what criteria the researchers used for levels of ‘sensitivity’ I cannot imagine – response to fluffy kittens? Do they cry at romantic movies? Do they weep when they’re in pain and frustrated…?

Consider also the lack of public knowledge, scientific research or medical understanding of vulvodynia in comparison to the widespread concern and pharmaceutical solutions for male impotence. How is it that so much time and money can be invested in the development of Viagra, when so little is invested in the sexual dysfunction of women, which often involves a life of chronic pain (as male impotence does not tend to)? It has always seemed wildly unfair to me that science has lagged so far behind in researching and treating female conditions. There seems to be an expectation that women simply have to put up with a certain amount of pain, or put up with a distressing or absent sex life.

When I finally got some information (thank God for the internet!) I discovered vulvodynia was a relatively common condition that affects about 15% of the UK’s female population. So why was I failed so badly by many of the doctors I saw and the medical literature? It’s not just a side effect of the mechanical view of the body that underpins Western medicine. My acupuncturist and Chinese herbal medicine doctor who listened to me describe my condition for quite some time, asked how long it was since I’d had sex? When I replied ‘seven years’, she exclaimed, “Your poor husband!” Indeed. Just go right ahead and reinforce all my years of guilt, sexual inadequacy and lack of confidence. Cheers. Thanks very much. Alternative medicine: treating the whole person….

The solutions offered (nerve ablation anyone? You won’t feel anything, but you’ll be able to have sex!), and the views of the medical establishment have constantly reinforced the view that intercourse, penetration, actual ‘proper’ fucking you know – not just that twiddling around with each other – is the ultimate goal

Why are these types of conditions not talked about amongst women either? I tried to talk to my mother about it, but it was clear she was simply embarrassed and as ignorant as I was. I think in many ways this crystalised the sense of shame I felt, that somehow I was responsible for my condition and it was not something that could be spoken about in detail. And yet why? It has a physiological, medical diagnosis – no different from a bad back or a broken leg. (And why was this so important to me as well – that my condition have a physiological root rather than an emotional one!? Surely both are valid? But the psyche – that traditionally feminine realm is not really taken seriously is it?) My closest friends to whom I mentioned the problem seemed mystified (lucky them) and made kind of awkward, unhelpful comments such as, “How is your boyfriend dealing with it? I think mine would leave me if we couldn’t have sex – he [meaning my boyfriend] must be really fantastic.” And he was. Still is. He has been my continuing support throughout all of this, never once blaming me or allowing his frustration to target me (as I know many other men in similar situations have done). But. The nagging implication of their words was… he’s only human. He’s only a man. And everyone knows what men want, yes? What they need.

And here is the crux of the problem, that despite improvements in the level of my chronic pain over the years, I’ve never felt able or pain free enough to resume penetrative sex. And unfortunately the solutions offered (nerve ablation anyone? You won’t feel anything, but you’ll be able to have sex!), and the views of the medical establishment have constantly reinforced the view that intercourse, penetration, actual ‘proper’ fucking you know – not just that twiddling around with each other – is the ultimate goal. The norm. And I have accepted that – desperate to be able to have a ‘normal’ sex life again (despite the fact that it was never orgasmic for me when we were able to do it – in stark contrast to our sexual relationship now). I was horrified to read self-help books on this topic that seemed to advocate attempting penetration, even with a degree of pain (“some women find they can tolerate/manage…”). Who were these women forcing themselves to engage in sexual activity that hurt them!? Perhaps victims of the phallocentric view of male sexuality that has somehow come to represent for us all, the sad pinnacle of sexual attainment. I never forced myself to do it. I’m not stupid. If it hurts I’m not doing it. But I felt the overwhelming guilt that I was somehow denying my husband a rich and full sexual life. I hated myself.

There is a part of him, deep down that is entwined with this belief that penetration is inextricably linked to his masculinity, his sense of identity as a ‘real’ man

The ridiculous thing is that actually, this inability to have intercourse has probably resulted in a far more satisfying sexual relationship. Thankfully I never properly lost my libido (although understandably it wanes from time to time in the face of pain) and ability to orgasm. So we have spent many hours exploring each other’s bodies in a very different way to ‘normal sex’. My husband has often said how intimate he finds our sexual relationship – and certainly this has preserved a strong sense of the erotic over our 10 years together. Perhaps having problems also forced us to confront and discuss things that otherwise would have gone unsaid – we had no option but to speak about things in detail. When we do have sex both of us will come (I’m often struck how many women seem to report this is not the case – particularly during penetrative intercourse – and wonder: how did your relationship end up so one sided?) and certainly neither of us would say that our sex life is unsatisfying! And yet, still I feel the pressure, the desire to achieve a ‘normal’ sexual relationship. I persist with the anaesthetics and the vaginal dilators even though this can sometimes be uncomfortable and anxiety-inducing, and has never actually resulted in me being able to face intercourse. Interestingly, when I tell people (hospital consultants or friends) that my husband and I have a great sexual relationship despite our problems, they do not really seem to take it seriously or believe me.

If I’m brutally honest, I think I have reached a point where maybe I would be quite happy if we just continued as we are, and we accepted that we were never going to have penetrative sex again. But I don’t think my husband is there yet. Partly I guess, because he’s not in pain so everything’s in working order so to speak, but also because there is a part of him, deep down that is entwined with this belief that penetration is inextricably linked to his masculinity, his sense of identity as a ‘real’ man. I don’t think he has ever discussed our problems with anyone apart from me, which actually I think is pretty sad and difficult for him. I’m not sure any of his male friends would understand, although perhaps I am doing them a disservice.

Ultimately these past 10 years, all the pain, angst and suffering, could have been alleviated to a huge degree if we had not been so socialised into acceptance of the patriarchal, penis-focussed version of sexuality; if we had received the message from those medical experts and the rest of society that: it doesn’t matter if you can’t have penetrative sex. Enjoy what you have. You’re not abnormal. So what?

Photo by styler*, shared on Flickr under a Creative Commons license