Guest post by ‘Artemis’, founder of Lip Service zine
Artemis has created a not-for-profit zine, Lip Service, that aims to shine a light on the experiences and projects of sufferers of pelvic pain conditions. Although many of the people featured in the zine suffer from pelvic pain conditions, the zine explores broader themes of female sexual dysfunction, frustrating journeys to diagnoses, and the reality of living with chronic pain. It contains interviews (including one with me, about Hysterical Women), articles, poetry, collage and art. Here, she tells her own story and explains how the zine came about.
When I was 19 years old, after a year of perfectly comfortable and pain-free intercourse with my boyfriend, sex began to hurt. It happened almost overnight. Any pressure or touch to my vestibule – the opening of the vagina – burned and stung and ached. Penetrative sex was no longer possible. Riding my bike and sitting for long stretches in the library also became difficult. I was confused and embarrassed, and only confided in a few close female friends initially, assuming it would pass as quickly as it had come on. A few of them had also experienced what they would describe as periods of discomfort with sex, and so I was reassured that my pain would be temporary.
I waited for the symptoms to pass. And when after a year they had only gotten worse, I went to my GP, who referred me to the first in a long succession of gynaecologists that I would see over the next five years. After an examination confirmed that I was “perfectly healthy”, I was sent away with a vague recommendation to take probiotics and the conclusion that vaginal health was “complicated”.
When the probiotics failed to yield any improvement in my symptoms, I went back. The gynaecologist repeated that there was nothing visibly wrong with me. Psychosexual counselling was presented as the last avenue to explore, and it was clear that no other questions were being asked. Initially, I felt sceptical. My symptoms had begun during a healthy and happy relationship, I had no history of trauma, my pain was not just related to sexual or medical penetration but also triggered by bike riding and long periods of sitting, and the burning sensation was particularly pronounced on one side of the vestibule. But the gynaecologist repeated that things ‘down there’ were complicated, and I was willing to accept that the interconnection between body and mind was beyond my comprehension. But more importantly, I was desperate.
The sessions were frustrating, self-funded, and expensive (at one point I was paying more on the weekly sessions than I was on the rent for my Zone 1 London flat). The counsellor was warm and well meaning, but she told me openly that she was treating me for vaginismus and involuntary muscle spasm. My referral letter from the gynaecologist stated clearly that vaginismus did not appear to be my problem. I reminded the counsellor of this on several occasions, and asked whether this form of therapy alone was going to help for the stinging, achy pain on the left side of my vestibule, to which she responded: “The answer is, I don’t know.” For £275 a week, that was not good enough. And so, I ended the sessions.
At the time, I was adamant that psychosexual counselling was the wrong course of treatment for me. While I could understand the rationale behind exploring attitudes towards sex and relationships in patients who experienced muscular contraction with vaginal penetration, talking therapies as a first and only port of call for someone experiencing a constant and indiscriminate burning in particular areas of the vulva and vestibule, did not make sense to me. Although I now appreciate that talking therapies have a place within a broader treatment plan for sufferers of chronic pain conditions, for someone with my symptoms and history, this should not have been the first and only treatment option (after probiotics!) that was explored.
I felt hopeless after the psychosexual counselling sessions came to an end. I had seen a few more doctors and no other options were presented to me. I had assumed that if there were answers, at least one of the gynaecologists I had seen would have offered them. I began to accept that I would never be able to have sex that I did not have to be drunk to endure, sex that did not leave me with a burning pain for days; that I would never really understand my body and what had gone wrong. I resigned myself to this and stopped asking questions.
It was only when a few years later, by chance, a Guardian article popped up on my Facebook newsfeed, that I started to consider that there might be other treatments to explore. In the article, a woman described her experience with a condition that I had never heard of, called ‘vulvodynia’. Our symptoms were almost identical. Finally, I had something that I could Google, research and suggest to my GP.
Although it took two more unsuccessful trips to see gynaecologists whose websites described ‘pelvic pain’ under their specialisms, in cities hours from my home, I was finally referred to a specialist research centre at Guy’s Hospital in 2020. I saw a dermatologist, who reassured me that my pain was real, and I was diagnosed with provoked vulvodynia, five years after the onset of my symptoms.
Having a name for my condition was validating and empowering. Knowing there was a community to which I belonged was incredibly comforting. Joining the Facebook support groups and speaking with other people who suffer from the same symptoms as me has been invaluable. Unfortunately, as with many vulvovaginal conditions, vulvodynia is under-researched and there are a lot of questions for which we do not have any answers. General levels of awareness of these conditions among the medical community and the public are low. It is in that context that self-education and raising awareness are so important.
It was with that in mind that I decided to create a zine series (Lip Service) to shine a light on the experiences and projects of others suffering from pelvic and vulvovaginal pain conditions. We are all different in our symptoms and experiences, but sharing stories and information is incredibly useful.
So much of what I know about this condition and the treatment options, I have learnt from others on the support groups. And the value of this sense of community extends beyond the comfort that it provides, as I learnt from my conversation with health psychology researcher Claudia Chisari for this issue of Lip Service. Our interview taught me a great deal about the psychosocial factors that play a role in the precipitation and management of chronic pain conditions such as vulvodynia. Equally, my conversation with Alice Rose Barber has transformed the way that I approached my own treatment and inspired me to learn more about the way that pain functions.
I hope that others will find things to take away from the conversations and articles included in the zine. There are a lot of people doing incredible things and making projects of their pain that I wanted to shine a light on. These efforts to raise awareness make a real difference; putting on shows, publishing poetry and writing articles – they might just reach someone that has resigned themselves to suffering in silence and inspire them to push on in their search for answers and treatments.
As for my symptoms, I have not found a treatment yet that has had a significant impact. But I am filled with hope as I begin my journey with physiotherapy, and just having the validation of a diagnosis has transformed my experience with this condition.