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Like many conditions affecting women, vulvodynia is stigmatised and under-researched. (Image: Archi Banal.)
Like many conditions affecting women, vulvodynia is stigmatised and under-researched. (Image: Archi Banal.)

SocietySeptember 11, 2023

Why did it take me eight years, plus a move to Australia, to get a vulvodynia diagnosis?

Like many conditions affecting women, vulvodynia is stigmatised and under-researched. (Image: Archi Banal.)
Like many conditions affecting women, vulvodynia is stigmatised and under-researched. (Image: Archi Banal.)

Women’s health conditions are often overlooked, and chronic vulvar pain is no exception. I should know: I’ve been living with it for two decades.

Next year will mark my 20th anniversary living with vulvodynia – or chronic vulvar pain, for the uninitiated. While I’m not planning to raise a toast to this milestone, I’ve been reflecting on life with a condition that, for most of my experience, has been stigmatised, under-researched, and poorly recognised by healthcare providers. 

Vulvodynia has been inching into the light due to advocacy for improved healthcare for women, but still shares features with conditions like endometriosis such as lengthy diagnostic delays. It took me eight years, plus a move to Australia, to receive a diagnosis. I wonder, then: have gendered biases in medicine and silencing of female pain shaped my experience of it?

The first time I had penetrative sex, I experienced a burning and tearing sensation that was excruciating and overwhelming. The pain was mainly confined to the vestibule (the “clockface” around the vaginal entrance) and felt like broken glass being dragged out of my body or a lit match against my skin. These symptoms didn’t abate on subsequent attempts, and intercourse was often difficult or impossible. My tissues tore easily, and I sometimes bled.

Incredibly, I didn’t immediately recognise the experience as abnormal, having internalised the idea that sex was often painful for women. To be a woman, so the logic went, was to be in pain, whether that be during sex, periods, or childbirth. 

Soon, though, I began experiencing daily sensations of burning, stabbing and rawness. It burned when I sat down; burned when I peed; burned when I walked around. This seemed less normal, so I took myself to the GP, who thought it was thrush and prescribed the required medication.

The symptoms still wouldn’t leave. Relevant swabs were taken to exclude other possible infections. Thrush was more often present than it should have been, so I was tested for conditions like diabetes, which were excluded. I still experienced significant pain when swabs indicated a mild thrush infection or no infection at all, and anti-fungal medication just didn’t work. I was put on three different types of medication, for longer and longer courses, to little effect.

I had multiple, brutally-painful speculum examinations and was asked about pain with sex. No treatment was offered, though, and I began to feel increasingly distressed. Whatever is going on with my body, I thought, it must be exceptionally rare.

Eight years into my mystery illness and with no clear answers, I moved to Brisbane to study. I was excited about my new city, but also in the worst pain of my life. I would sometimes cry myself to sleep. The pain was also beginning to spread beyond the vestibule.

I quickly enrolled in a medical centre and asked my new GP for a referral to a gynaecologist with an interest in pelvic pain. The gynaecologist suggested a final drug regimen to treat potential hypersensitivity to yeast, but also did something no one had done before. She stabbed my vestibule with a cotton bud and asked me to rate the pain out of ten. “Ten!” I yelped. “You also have vulvodynia,” she declared. After the drug regimen again failed to do much to alleviate my symptoms, vulvodynia became the primary diagnosis. 

Given that vulvodynia means vulvar pain, it may seem that this diagnosis is like going to a doctor with a headache and being told you have a headache. But the diagnostic label matters, not only because it allows women to research their condition and find a community of people who share their experience, but also because vulvodynia has its own (somewhat hotchpotch) treatment regimens. In my case, I was put on medication to treat nerve pain. A course of amitriptyline failed due to side effects, but I had more success with pregabalin.

This drug’s moderate pain-relieving effects allowed me to complete a course of physiotherapy, which involved inserting dilators in graduated sizes to stretch the vaginal tissues. Dilator therapy is offered to women with vulvodynia as the condition often results in a hypertonic pelvic floor or vaginismus (where the vaginal muscle goes into involuntary spasm) as a learned response to pain. One treatment option, vestibulectomy (surgical removal of painful vestibular tissue), became unavailable to me once my pain spread beyond its initial site. The surgery has a high success rate of between 60-90% in well-chosen candidates. I often wonder if vestibulectomy would have alleviated my problem had I received an earlier diagnosis. I will never know.

Vulvodynia is not, I learned, exceptionally rare. The US-based National Vulvodynia Association, estimates up to 16% of women may suffer from the condition at some point in their lives. Based on 2003 data, 60% of women visited at least three clinicians to receive an accurate diagnosis, while 40% remained undiagnosed despite seeking medical care. The UK Vulval Pain Society warns that, to this day, many doctors are unaware the condition exists.

In 2013, my Australian GP had not heard of vulvodynia, often incorrectly referring to it as “vagidynia.” In 2019, after I returned to New Zealand, my new GP had heard of the condition, but then proceeded to lecture me with misinformation. “It is very uncommon in women your age,” she told me, sceptically. The typical age of onset is between 18-25 years of age, as was the case for me. 

Women with vulvodynia report low quality of life scores. The condition interferes with intimate relationships, physical exercise, and even sitting for long periods, but also produces feelings of stigma and isolation. I mentally struggled with having a condition no one seemed to know about. I felt I couldn’t relate to my peer group. I withdrew socially.

Diagnostic delays are not the fault of individual GPs or gynaecologists, but rather systemic failures in researching, diagnosing, and treating conditions that disproportionately affect women. Vulvodynia was described in an 1880 medical case report, but then mostly disappeared from the research frame for a century, gradually reappearing in the 1980s. I find this hard to wrap my head around: all those women who failed to get any answers or treatment for their pain because their condition wasn’t treated as real or serious, or because taboos around discussing the female body prevented them from speaking up at all. 

The Chronic Pain Research Alliance argues that chronic pain research is grossly underfunded relative to its health impacts and costs to economies. As Gabrielle Jackson points out in her 2020 book Pain and Prejudice, although 70% of chronic pain sufferers are women, 80% of research has been conducted on men or male mice. Even within chronic pain research, understanding of vulvodynia is “way behind” other conditions, according to pain researchers Dr Jane Chalmers and Professor Lorimer Moseley. Jackson’s investigation highlighted that no federal research funding was allocated to vulvodynia in Australia throughout 2013-2017.

Treatment is further complicated by the fact that causes of vulvodynia remain elusive and are the subject of disagreement. While it seems that altered pain perception plays a role, the nature of onset is highly individualistic. Some women get vulvodynia after an injury, for example a back injury or during childbirth; some get it after an infection; some, like me, have had it since first intercourse or tampon use.

Here, too, a variety of questions have been asked: are these women born with too many nerve endings? Are there local immunological errors? Have they suffered some kind of stressful life event, like sexual assault? My Australian physiotherapist, in the wackiest theory put to me, wondered if my body might be over-identifying with the melancholic film characters I was writing about in my thesis. 

I have experienced tension between providers who favour medical approaches, such as medication or surgery, and those who prefer psychological interventions like mindfulness and cognitive behavioural therapy. I have found a combination of treatments useful, but I worry that many psychological measures ignore the role of power in shaping our pain experience. While there is logic in emphasising factors within the individual’s control, vulvodynia sufferers do not make sense of their pain in isolation. 

Medicine’s androcentric history is culpable here. As Jackson explains, there is a known association between low mood, anxiety and pain amplification. Therefore, she reasons, clinician disbelief or inadequate knowledge, diagnostic delays and lengthy cycles of trial-and-error treatments all make women sicker. Likewise, psychologist Belinda Lavò, in her New Zealand-based study of young women’s experiences of coital pain, warns that a sole focus on women’s maladaptive or “catastrophising” responses to pain ignores the influence of heteronormative ideology and the male role in pain management. 

Lavò’s participants reported experiences that uncomfortably resonated with my own. I often didn’t mention the pain to partners until it became too agonising to ignore. I worried I was unreasonable for wanting to take time and build up trust before discussing my condition, as women today are expected to be sexually carefree and immediately keen. Sometimes, men I dated would become noticeably colder once they discovered sex was painful for me or they prioritised their own needs above mine, for example by refusing to wear condoms. This felt dehumanising, as if my entire being was reduced to my “defect”.

When I think about what has been most useful to me in my journey with vulvodynia, I think of recent cultural shifts that have encouraged me to voice my pain. While the physical sensation of vulvodynia is bad, the silence surrounding it has made my experience considerably worse. Seeing coverage of vulvodynia in media outlets like The Guardian and the BBC has been incredibly meaningful and has encouraged me to write this piece. After all, there must be thousands of women in New Zealand just like me. 

Granted there is need for further research into vulvodynia’s causes and novel treatments. A significant gap is how experience is mediated not only by gender, but ethnicity, class, and sexuality.  To create further advancements for women with vulvodynia, and to help those with this condition feel recognised and less alone, the collective patient voice is crucial. History, after all, shows that progress is not made until it is demanded. 

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